Guest Blog: 'I Am an Autism Mom'

Welcome to the Tuesday guest blog. Every Tuesday, "On Balance" features the views of a guest writer. It could be your neighbor, your boss, your most loved or hated poster from the blog, or you! Send me your entry (300 words or fewer) for consideration. Obviously, the topic should be something related to balancing your life.

Everything Else Vanishes

By Christina Adams

Christina Adams is the author of A Real Boy: A True Story of Autism, Early Intervention and Recovery. Her work has appeared on NPR and in The Los Angeles Times Magazine and Brain, Child Magazine.

Life was normal for my son for a time, and then it wasn't. The bright, social 15-month-old who charmed his pediatrician with his curiosity and skills turned somber, spent his time alone and became obsessed with water and vaccuum cleaners. I didn't know why, didn't know that at nearly three years old he'd be pronounced autistic. He wasn't one of those kids, the ones who eat only french fries and milk, won't sleep, scream when their shirt tag grazes the back of their neck. He was just a bright child who was a little "different," and then suddenly, he was hand-flapping and walking in circles. While I was still dreaming of his future, my lovely, talkative baby slipped away.

Then I found out why--and like every other parent, I was terribly afraid. I was swamped with medical terms and dismissive doctors. Other parents offered me the salvation of information, but then I faced a giant spinning Lazy Susan of diets, medications, supplements, and expensive therapies. Plus, most day-care providers kick out kids on the spectrum--mine got kicked out of two schools in two months---so I'd pretty much hit rock-bottom. I dropped the novel I'd just written, stopped my other work, and began the full-time job of rescuing my son.

Naturally, these circumstances make it hard for "autism moms" to work. " 'Parent of kid with autism' is their primary--and unpaid--job," says Peter Gerhardt, president of the Organization for Autism Research. "Nearly 60 percent of moms of kids with disabilities are unemployed; between 10-20 percent of fathers, too." When a mother becomes Autism Super Mommy to rehabilitate the child, she faces criticism from all sides. "The office says they understand, but they want you to work, while the therapists recommend that you quit," says L., a married senior executive who relies on caffeine, a cell phone and a nanny to run her life -- and who cannot quit because she makes the bigger salary.

You do what you can. Many moms, like I once did, even run 40-hour-per-week in-home therapy programs, cook food without dairy or wheat and see multiple doctors and clinics. Before the week even started, my assignments were overwhelming. Once I got so stressed from the paperwork and unrelenting schedule that I couldn't breathe and had to see a cardiologist for chest pain. Still, I was lucky my child got treated while I was married and could stay home---although I'm now single. Autism can tax your marriage, too.

Treating autism is about money and time--lots of it. Even if someone takes your child to therapy--after you find and schedule the therapies---he needs full-time help with speech and social skills. My son and I built his language word by word, from breakfast table to bedtime story, which helped him become the gifted conversationalist he is today. Truth is, if not for autism, I'd probably have two published novels and be a college professor, and I try not to think about my income and Social Security earnings. But any autism parent would shove their career away with both hands for the chance to talk with their child.

Still, autism - like motherhood -- can give you magic powers. I learned science, law, therapy and advocacy; I became fierce in the pursuit of justice. Last year, when my knees nearly buckled in the sedate hallway leading to my first divorce lawyer appointment, I whispered to myself, I can do this: I am an autism mom.

I have friends who handle full-time careers well; others have gone part-time, while some will never return to work. Most moms, after their children recover, hit a middle ground, or stay very disabled, eventually reclaim parts of their previous lives--and this can include work.

Still, for autism moms, our child is our life now. We watch the beautiful face that often hides a brilliant mind, the face of the boy or girl who loves us more than anyone, who gives us more pride and struggle and agony and reward than a paid job ever could. This is our work. Everything else vanishes.

By Leslie Morgan Steiner |  June 13, 2006; 7:00 AM ET  | Category:  Guest Blogs
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I'm an autism dad, and I thank you for sharing. Somehow my wife and I have managed to remain married. However, SHE's the hero who brought our son most of the way back. I'm a scientist, and many of the treatments made no biological or medical sense to me at first. She persisted, and our son slowly but surely continues to improve. Autism affects 1 in 178 births, using the latest numbers. It appears likely that a generation of children were damaged by well-intentioned increases in the immunization schedule, with a mercury-containing preservative (thimerosal). Someone at the FDA couldn't do simple math. A subset of children cannot handle heavy metals like mercury well, and the symptoms of autistic spectrum disorders resembles mercury poisoning. Sadly, the CDC has covered this up, failing in their public health mission. On June 29, a large group of parents will be marching at the "Scene of the Crime" Rally in front of CDC HQ near Atlanta - among them my heroine. Please support them, and demand the TRUTH from our Government!!!

Posted by: Autism Dad | June 13, 2006 8:02 AM

It is so sad to see this happen to children and their families. My doctor told me that the new immunizations do not have mercury in them. Also, how do bring a child back from autism. I don't know much about it, except that it's different in every child.

Posted by: scarry | June 13, 2006 8:15 AM

Are children with autism eligible to receive disability benefits?

Posted by: June | June 13, 2006 8:25 AM

Chronic ills exact high tolls.

My husband is leaving this month, after more than twenty years.

Our teenaged son will continue to struggle with a serious immune system disorder.

Now, facing the singleton-life with a nose-dive in income, I am sad that I won't be able to help him financially during his adult years.

Illness can, in six months, turn a middle-class life into a nightmare -- one-half step ahead of poverty.

Marriages do break-up when kids are sick.

Posted by: Aanother condition-mom | June 13, 2006 8:41 AM

This was so beautifully written. I have raised a handicapped child for 20 years and it is true that it redefines parents. You also find out who your real friends are - and this happens pretty quickly. However, even with the hardships and losses the quality of the inner life o the parent is enhanced. It may take many years to know this - and one does not know this without a lot of pain involved. I sometimes think that my child saved me instead of the other way around.

Posted by: just another Mom | June 13, 2006 9:03 AM

This is the saddest topic so far on the blog. I think all these parents are heros. As a new mom, I wanted to learn more about immunization and mercury. In fact, I asked our ped point blank about the link (it was about a year ago) and she totally discounted the autism link. Did she lie to me or was she poorly informed? Are they still using the preservative in immunization shots?

Posted by: worried mother | June 13, 2006 9:05 AM

What you wrote about watching your bright, beautiful son change into someone else was my experience, too. I wish that I had had the energy to fight as hard, but the terror overwhelmed me. My son is still significantly different, and although he has not met the challenges of job and college yet, I'm afraid he will ultimately just be disabled. Very few people will ever know how brilliant and sensitive he is because he cannot show it and doesn't like people well enough to make them fond of him. This is the most heartbreaking disorder I can imagine because my son is a "near miss"--so beautiful, so brilliant, so sensitive--but not able to be part of life.

Posted by: asperger's mom | June 13, 2006 9:06 AM

Question for Autisim Dad, Was thimerosal in the dpt shot given before they changed it in the early 90's? We have a daughter with brain damage from the dpt shot.

Posted by: em | June 13, 2006 9:07 AM

I know it's really, really tough when your child turns out to be not what you expected in terms of "normal." But to give yourselves the labels "autism mom" or "autism dad" reflects your guilt feelings, as if it's all your fault. You need to stop this for the sake of your child, more than anything else. He/she will feel guilty because "it's all his/her fault" when actually it's nobody's fault. Guilt is harmful to relationships. And you are no use to your child in the long run if you have nothing in your life except "rescuing your child." You will end up with "nothing in your life" because your child is not "part of you" - he/she is a separate individual who needs a balanced, rational, loving, competent parent. He/she does not need a "martyr" or a "co-victim."

Posted by: Maggie Leigh | June 13, 2006 9:07 AM


Do you have a child with autism?

Posted by: scarry | June 13, 2006 9:21 AM


My sister suffered an adverse reaction to a DPT vaccine in the late 1970s and has significant brain damage. At that time, there were several lawsuits filed against the vaccine manufacturers but many failed because of difficulties proving definitively that the DPT shot "caused" the brain damage. I'm not aware that thimerosol was in those vaccines but it's worth looking into.

Posted by: in dc | June 13, 2006 9:42 AM

My doctor also told me that my daughter would be more likely to die from the flu than get autism. So I geuss mercury is still in flu shots.

Posted by: scarry | June 13, 2006 9:45 AM

Why is it always the moms that quit their jobs and take over the other full-time job of caring for a child with autism or other conditions?

Posted by: Sarah-Jane | June 13, 2006 9:46 AM

Nobody's kid turns out to be perfect. It takes some of us longer to find that out than others. For me it was a Montgomery County Police Officer at my door. Suddenly my angel baby was a bully. No matter how wonderful children are, every parent has to accept their child's individuality.

I must agree with Maggie - labeling yourself is no good. You're the parent of a child with autism, but you're also a mother, and a teacher, and a .....

Don't let autism rob YOU of who you are.

Posted by: RoseG | June 13, 2006 9:51 AM

Wow, your story made me weepy, as did some of the other comments. I have nothing but admiration for parents who have tackled something like this. Thank you for your inspiration and insight.

Maggie, I think you are being entirely unfair. Using the term "autism mom" to me implies a sense of purpose and maybe even some pride in the amount of strength this woman has garnered in order to overcome the challenges she faced. When we overcome a trauma, that new strength becomes part of our identity. It doesn't mean she has "nothing in her life" - she clearly wrote about reclaiming parts of her life once things begin to stabilize. I don't see any guilt in this column, I see love, caring, compassion and purpose.

Posted by: Megan | June 13, 2006 9:53 AM

maybe they just picked the blog name so everyone knew they had a child with autism. Just like some people use the blog name Irish or father of four. I really doubt that they go around saying high, i'm autism dad. Just like I doubt that if it wasn't today's topic they probably wouldn't use that name.

Posted by: scarry | June 13, 2006 9:54 AM

I read an allegorical essay a few years back that likened having a child with a disability to taking a trip with one's friends. Everyone plans the same trip to Paris in Spring, but when you get off the plane, you realize you are in Denmark while the rest of your friends are in Paris. It isn't that Denmark is horrible, because it is a very nice place, but it wasn't quite what you expected. You know that the Paris trip is now off, so you have to regroup and have a good time by yourself in Denmark. Then, you realize that the people you meet in Denmark are just as wonderful as your friends in Paris and the locals, who have been there for a while, are very helpful in showing you the places to go, the sights to see, and finding your way through the maze of streets without a map.

My wife and I specifically decided to stay with one child rather than risk a complication with a second (age factors here), but we have plenty of friends who deal with these issues every day. I'll be thinking about those of you with autistic, Downes, cerebral palsy, and other unique children. Try to enjoy your trip to Denmark, and know that you are blessed.

Posted by: Working Dad | June 13, 2006 10:13 AM


According to an Institute of Medicine Report (available online, p. 27) prior to 1991, "the only thimerosal-containing vaccine that was recommended for all infants was the whole-cell pertussis vaccine (DTP)."

Posted by: In DC | June 13, 2006 10:14 AM

Dunno if folks go around saying "I'm an autism Dad", but I've heard a lot of women saying "I'm a single mom!" Dunno what that really means..... Seems like there looking for some kind of special treatment.....

Posted by: June | June 13, 2006 10:16 AM

Worried Mother wrote: "Did she lie to me or was she poorly informed? Are they still using the preservative in immunization shots?"

I don't think she necessarily lied or was poorly informed; the autism-thimerosol link is controversial and so she may have read up on it and decided she thinks it's not a strong connection. As parents, we may have a different sense of what level of risk is appropriate for our children and so your approach to reading the literature might be very different from hers. So I would encourage anyone to do their own reading on the topic.

On your second question, I don't know for sure, but my understanding is that the thimerosol is not used in most childhood vaccines anymore, but that they also did not pull the old vaccines off the shelves, so there may be some with it still floating around out there. Ask your doctor whether the particular lot she's using has it in there.

Posted by: Megan | June 13, 2006 10:17 AM

I'm the mother of an autistic boy, but I'm also leering of taking on the label "autism mom" -- because what it communicates, in fact, is that I'm taking on my shoulders the superhuman task of "saving" my son. My son needs lots of help -- but he does not need to be saved. He is beautiful, brilliant, and talented just the way he is, even though he is socially unskilled and struggles with communication. I'm slowly coming around to the belief that he doesn't need to be cured -- just nurtured and assisted for his special needs. Other kids can't read or do math, and need help with that. My kid can read and do math, but he needs help reading social cues and using personal pronouns correctly. Different, but not lost.

All the "autism mom" activities -- the special diet, the floor time, the non-stop advocacy -- can certainly be pursued to meet the real needs of one's autistic child. But they can also be pursued to make a martyr or tortured saint out of mom. I'm not saying that's the case here, but I am saying that we moms have that capacity, and we need to be very careful. There are so many people who will help us -- yes, wonderful civil servants, therapists, teachers, DAD -- if we're willing to let go of the super-mom self-identification long enough to let them.

Posted by: Donna B. | June 13, 2006 10:18 AM

"Dunno if folks go around saying "I'm an autism Dad", but I've heard a lot of women saying "I'm a single mom!" Dunno what that really means..... Seems like there looking for some kind of special treatment....."

Or maybe they are simply describing their situation, which probably defines a big part of thier lives. Geez.

Posted by: Megan | June 13, 2006 10:20 AM

It would be nice to have the thimerosol excuse for autism, but there has been no thimerosol in any kids' shots for 3-4 years now (they phased them out). Autism has shown no sign of reducing prevalence since it was phased out. It may be because of other environmental factors, including mercury poisoning, but it is disturbing to me that folks would stop using beneficial vaccines because of a no-longer-used preservative.

My grandfather died of polio when my mother was only 4, so perhaps I overstate the risks of avoiding vaccinations in my mind. But I think others understate the risks.

Posted by: Facts | June 13, 2006 10:21 AM

I go around saying I am an Irish Catholic Democrat and a coal miner's daughter too. It's just becasue I am proud of what I am. Maybe single mother's are proud that they can do it all by theirselves.

Posted by: scarry | June 13, 2006 10:21 AM

Another of the many challenges of having a child with a disability is dealing with other children in the family.

For a young child, understanding that a parent must spend extra time with a sib and that the sib needs what might look like special favors is very difficult.

I have a sister, who, when we were children, needed a number of surgeries and extensive physical therapy. Although this was not as difficult as dealing w/ a child who has a chronic disability such as autism, it was still a large burden on my family, particularly my mother.

We lived in a small community, so, of course, everyone knew about my sister and sent her cards and gifts when she was hospitalized. (In those days, people didn't get booted out of the hospital so quickly. For some of her surgeries, she was there for several weeks.) To me, it looked like she was getting lots of treats and lots of attention from our parents. I, of course, was jealous and felt left out.

As a grown-up, I understand that my parents were doing everything they could to ensure that my sister got the care she neded and that they were doing their best to take care of the rest of us. But the jealousy and the sense that she was more important than I was stayed with me for a long time.

So, if you're a friend or relative of someone who has a child with a disability, one way to help is to do some special things with other children in the family. The parents will appreciate it, and so will the child.

Posted by: Healthy Sib | June 13, 2006 10:22 AM

Thimerosal vaccines began to be phased out in 1999, and were no longer produced at all after 2001 (except some flu vaccines). Given the expiration date on vaccines, there are no longer any thimerosal vaccines around.

Posted by: Facts | June 13, 2006 10:25 AM

Having worked as a professional in the field of Special Education, I commend you in your efforts to pull your son from the grip of autism. Too often parents don't realize how important an early intervention is with this particular disorder. The sad thing is that not many families can afford to have a parent at home, nor can they afford a 40 hour per week intervention program. My question is, how can we help the families that so desperately need outside resources?

Posted by: Allie | June 13, 2006 10:25 AM

I, too, have a son who was diagnosed with autism when he was 2. Today he is a brillant, funny, talented, 12 year old competitive swimmer. I know that the 4 intense years therapy for him totally changed my life. I wouldn't trade it for the world. My theory to explain at least one part of the rise in the number of autism cases is due to a vastly improved ability to diagnosis it. When my son was diagnosed we were told that he was moderately retarded with an IQ of 70. As recently as the 1970's it is likely that he would have been placed in an institution. At the core, autism is a communication disorder. I think these kids used to be diagnosed as developmentally delayed and shunted to the side. For those who are curious, our son attends the most academically rigorous private school in our city as a straight A student and is a normal adolescent, good and bad.

Posted by: mom1 | June 13, 2006 10:31 AM

Thank you for writing that beautiful article. When you find out you are the parent of a child with autism, I know from experience, when sorting through treatments, doctors, therapies and etc., it is like stumbling through a neverending maze in the dark with your arms bound, while the clock ticks. My five-year old son has slowly come back, some, after a lot of occupational and speech therapy. It really is a struggle. We just keep on keeping-on. Always wondering "should he try this therapy?" "are we doing all that we can?" I know what you mean, he's such a sweet kid, and he's still just so afraid of showing anyone that. He really misses out on a lot of things, though at least he misses out on less now. Thanks again.

Posted by: autismmom | June 13, 2006 10:36 AM

I found this posting very poignant and have nothing but awe for parents with children with special needs (I don't know if that is the correct term -- its intended to be a broad term). I have relatives facing the same issues and a friend from church who has an 11 year old autistic son (she works with him constantly and has chosen to home school him and you would never know that he is anything but a "normal" little boy). This woman and her husband are angels as are all parents who face these issues on a daily basis. I hope that those of you who face these issues have a good support system in place for you and that you do reach out to family and friends when you need a break (and I hope they offer).
I do have a question though. For those of you who do have children who are autistic, what can you tell us about this situation to better educate us? From what I have seen with my friend, very intense one on one sessions with her child have done wonders for him -- is it something that with the right "therapy" can cure or at least help put back on track or will children always be autistic?
Sorry to sound so uneducated about this but the 1 in 178 statistic to me is startling, and I have read about families where all of their children have autism -- I wondered if what "autism dad" said was true that it was related to the mercury in immunizations and that it had been a proven link. It does seem like a very high statistic. And, I wondered if someone would post information on any organized efforts to change this situation (in addition to the planned CDC event). Are there any plans to hold hearings on this issue?
Thank you!

Posted by: typical working mother | June 13, 2006 10:39 AM

Mom1, can you tell me what types of intensive therapy your son had for the 4 years? I would love to learn from your experiences if you are willing to share. If you don't mind sharing, and would like to email me separately I am at Again I have a 5-yr old son who was diagnosed with high-functioning autism.

Posted by: autismmom | June 13, 2006 10:41 AM

I don't want to rain on anyone's parade, and/but the author should have told you all this way up front: MOST AUTISTIC KIDS CANNOT BE "BROUGHT BACK." Some -- a minority -- can, like the author's, and it is a 24/7 existance, a testament to fear, determination, love and sheer will power on the side of the parents and the kid. But sadly, you can do everything and anything, and do it well, and still never "talk" to your child...and your child may never be able to function on his/her own. It's a cruel, evil syndrome that we still know so little about.

Posted by: Tracey | June 13, 2006 11:07 AM

I like the concept of "A Trip to Denmark." I am the parent of a daughter with Asperger Disorder, a form of autism. The early years were very tough, as described in the blog. Disappearing child, kicked out of three schools, self-injurious -- jumping off high places -- spinning and head banging, couldn't toilet train, couldn't talk to anyone. It took several years and many doctors to reach a diagnosis we could deal with. As soon as she was on a medication program she improved markedly. She is now twelve, an honors student in a regular school. She is tall, healthy, beautiful and keenly intelligent. She now talks of being a veterinarian, loves her school and has friends who interact with her. Being her parent has taught me many good things -- especially about expectations and about patience -- that I did not learn from parenting my "normal" older child. I am definitely enjoying the trip to Denmark.

Posted by: Trip to Denmark | June 13, 2006 11:10 AM

While many have heard the suggestion of a link between autism and the Measles, Mumps, Rubella vaccine, few realize that that link was proposed by a man who was attempting to market an alternative measles vaccine. I believe he was indicted but don't know the disposition.

Posted by: autism and vaccines | June 13, 2006 11:10 AM

Yes, the vaccine-autism link, when you look into it, had mostly people with a vested interest in the research (paid by the families who believed it, or by the lawyers who were suing on the families' behalf).

It has always seemed to me to be a tin-foil-hat theory, especially since thimerosal-free vaccines have been out for 5 years and the autism rates haven't gone down. I know someone who has *three* kids with autism, and believes they were all from vaccines even though only the first kid ever had any vaccines! I just don't get it.

Posted by: Skeptic | June 13, 2006 11:18 AM

My Aspergers sister is 24. I am 26. After we were born, because of my sister's challenges, my mother never returned to work and our family situation has required an unusual degree of flexibility from my father's job as well.

I'd just like to point out that for those whose children "on the spectrum" do not recover to the point of self-sufficiency (let alone becoming a veterinarian--lucky you, earlier poster!), the burden of ongoing care never ends.

Posted by: Aspergers Sib | June 13, 2006 11:43 AM

Sounds like the vaccine was contageous to me.

Posted by: To skeptic | June 13, 2006 11:56 AM

This is mainly in response to various other messages in this discussion.

I am currently the editor of a scientific journal and a former researcher (and more importantly, a geneticist with a PhD and 14 years at the bench). When my son (now 4 years old) was first diagnosed with an autistic spectrum disorder, I read every research paper I could find on the alleged connection between thimerosal and autism. As badly as I wanted to find someone or something external to blame, a dispassionate analysis of the studies that have been done shows that there is NO significant evidence of a connection. I'm all for removing thimerosal from vaccines and would love to see a class action lawsuit stick it to big Pharma if it was warranted, but the belief that thimerosal is the cause of much and perhaps any of the autism being diagnosed today is not supported by conclusive scientific evidence.

When I discussed my 'findings' with other poeple in a support group, they refused to believe me and became furious. One woman in particular (whose husband is a 'science' writer who has never done any scientific research) told me I was flat-out wrong. Not why: just that I was. It seems that people need someone or something to blame more than anything else.

My son is doing well.

Posted by: Natureboy | June 13, 2006 11:58 AM

I have 5 grandchildren,one of them a girl,
age 7 who is Autistic.
Last night I felt she made a real breakthrough. She asked me for *peanuts".
Autistic children do not like to share.
I asked her if I could have some peanuts.
She ignored me. I asked her again."No".
A few minutes later I asked again and she
said " N O". The last time I asked she
reached for a crayon and printed clearly
I got the message. She is able to
communicate in her own way. She never once
looked at me but grandma eventually got
her message.
We have learned to treasure each tiny
step she makes and this was a magic moment.


Posted by: Jill | June 13, 2006 12:24 PM

I gather that Ms Adams has no other children. Because as the only sib of a 50-year-old autistic woman, I wonder what would have happened to those non-autistic children, when "everything else vanishe[d]"? Too often I read articles by parents of autistic children, and any other children in the family who happen to be "normal" are mentioned in a throwaway sentence or two, and I fear for those children. They are often forced to function as surrogate parents or quasi therapists, when they are children themselves, no matter how gifted or attractive or popular those normal children might be. They are still children, children who need parenting, and if autism becomes their parents' entire lives, what happens to them? There are no easy answers where autism is concerned, but this is a question that must be asked.

Posted by: Blair Burton | June 13, 2006 12:32 PM

I am a single mom raising a 7-year old Autistic son. It is not easy and it requires a lot of work on the part of the parents. The thing that bothers me is that Autistic children don't "look" abnormal so when they have their public tantrums, like my son does very often, people like to make comments about how I should punish him. I have to always explain that he's Autistic and now that this topic is becoming more popular, people are just beginning to understand. I commend all parents of children with special needs. Also, someone asked if Autistic children are eligible for disability. I checked into it here in the Wash Metro area and was told that my income (anything over $20,000/year w/ 1 or 2 children) is too high. They said that my son's Autism did not qualify him either.

Posted by: Shelia | June 13, 2006 12:32 PM

"Are children with autism eligible to receive disability benefits?"

If the parents have even a modest income, the child will probably not qualify.

Posted by: Mine has ASD also | June 13, 2006 12:36 PM

I just want to say that the FLU SHOT CONTAINS THIMEROSAL. Unfortunately, most doctors won't even let you know. Pediatricians still push it. You may get the non-Thimerosal version by getting a "single-dose vial" which is packaged individually. You must specifically ask your pediatrician for the single dose vial or get a prescription for it. The "multi-dose" shots come from a large batch, thus requiring the Thimerosal preservative...
Also, the CDC has changed their recommendation for babies 6-24 months to get flu shots, however they make no mention of the thimerosal issue.

Posted by: DD | June 13, 2006 12:37 PM

I am the parent of an Aspergers son and a neurotypical (normal) daughter. We didn't know there were any issues until he went to Kindergarten and then the teacher was not understanding. We went through pediatricians, counselors, psychologists until we talked to a child psychiatrist who helped us figure things out. Along the way I found out that I had Aspergers as well. I like the previous writer's reference to Denmark, I would also liken it to the grieving process. I did everything in my power to expose my child to different situations to be more rounded, less geekish. I didn't want him to be like me. And then I found that he had Aspergers. I mourned that my son will probably never play group sports on a regular team, that he may never be at ease in social situations. And then when I was done grieving, I picked myself up and started working on helping him live in this world.

Posted by: Midwestern_ASPIE | June 13, 2006 12:40 PM

Could those of you who are knowledgeable and face this on a daily basis explain what Aspergers is (I understand its a form of autism) and what different types of autism there are and what issues you as parents face -- or is there a website that will explain this. I find this discussion very interesting and helpful, even though I am not going through it myself. All of the parents going through this have done an excellent job describing the emotional aspects of having an autistic child but what are the symptoms -- I don't know if anyone who posts on here is concerned about whether their children might be autistic but this might be helpful.

Posted by: typical working mother | June 13, 2006 12:57 PM

I just finished reading a sensitive book about the decision NOT to have children. In it, the author refuses to use the term child-free because she feels it doesn't acknowledge the sense of grief and loss that often accompanies the unconventional decision not to raise children. She goes on to explain that parents also experience loss when they have children (loss of freedom, loss of a former self or way of being) but that this loss or grief is rarely expressed. I'm in the process of deciding whether or not to have children and am very curious to hear what parents think about this. Did you experience grief or loss after having your children even though you love them?

Posted by: Friend | June 13, 2006 1:05 PM

The above question about loss is for all parents. Not just those dealing with autism.

Posted by: Friend | June 13, 2006 1:07 PM

I met a family 15 years ago that was raising a girl and a boy. the boy was autistic. When I visited, I noticed that the girl spent more time with her younger brother than the parents. She helped him do activities like put pennies through a slot in a butter tub and pound pegs into slots. As she grew into her teens, it seemed to me that she became the major caretaker of her brother. She was happy, but very shy. She disliked going to high school events like football games and dances, and wasn't even interested in getting her driver's license until she graduated. She's in her mid 20's now and just beginning to date. She's also drop dead beautiful from the inside out, her graced unmatched by anyone I've ever met. the family attributes this from the relationship with her brother after all these years. When she's ready, I'll attend her wedding. I can't wait to meet the guy she deems worthy of her hand... I've never met such a man, Not yet, anyway.

Posted by: Father of 4 | June 13, 2006 1:21 PM

I too have a child with ASD. There is so much about ASD that I want to say but the words escape me. It's difficult to find the words, I suppose, because ASD touches every aspect of the parent's life as well as the child's. How can you talk about every aspect of your life except in the most cursory terms.

Maybe some children "recover" or (maybe) even cured. While my child has made some gains through bio-medical and educational therapies, he's still very low-functioning. We can only keep on trying help him help ourselves help our family help our community.

I love him so much. I just wonder who's going to take care of him when we're gone.

Posted by: Coping but Just Barely | June 13, 2006 1:22 PM

Every choice is an open door and a loss. Having children can be hard. For me, the first year was quite an adjustment. I was sleep deprived and tired. I longed for just a moment when I could read the paper and drink a cup of coffee without being interrupted. It was hard to say good bye to leisurly Sunday mornings and spontaneous nights out. I could not even go to the bathroom without leaving the door open just in case.

But six years later, that adjustment seems so far away. My little boy is another person in the family. He has his own ideas, opinions, likes, and dislikes. He teaches me about myself as as much as anything else. Now, I can close the door when I use the bathroom, and I can read the paper and drink coffee on leisurly Sunday mornings. Spontaneous nights out are still gone, but spontaneous trips to the movies or the park are now in. He surprises me with his observations and commentaries, and I am glad I went this route.
I don't think having children has to be the point of existence. I think you can have a perfectly fine life without them. But for me, the most wonderful part of having a child is that eventually, that child will be an adult who is your friend.

Posted by: rockville | June 13, 2006 1:30 PM

To Friend:

That's a really interesting perspective on the question of having or not having kids. I definitely experienced some sense of loss, though I would not equate it with grief. The early months after my son was born were quite difficult for me, and mostly what felt lost was my sense of identity - I've always identified myself in large part through my intellectual/career pursuits, and that was largely gone for a little while. I felt lost within the day to day of being a mom (and of course also experienced enormous pride and joy and extraordinary love and total awe at the newness of that little life; I'm just trying to share the other parts). But that slowly subsided as I re-entered school and found other new-mommy friends with similar interests and figured out how to restructure our social life. And now that I am back at work, I feel much more balanced.

I don't feel the loss of freedom, I guess because we still do so much of what we did before.

But mostly what I feel after having my son is the enormous gift of love; that far outweighs any sense of loss that I've felt over the last 19 months. Having this little person in our lives has been totally amazing. It teaches you more about love and the human spirit than you can imagine.

Reading the comments of the parents of children with Autism and other disabilities is amazing, and the overwhelming sense of love that they show I think is a testament to the true joy and meaning of parenthood.

Posted by: Megan | June 13, 2006 1:33 PM

I am a pediatrician. I am also a quadraplegic and the mother of a 15 y.o. joy with Aspberger's. Denmark? I don't know, sometimes it felt like Antarctica by way of Iceland. We have faced many challenges and my heart goes out to the Moms who are walking this journey alone. (incidently, my husband and I have been told so many times how my disability, our son's prematurity, our son's autism was going to cause us to divorce, I'd be rich). Anyway, thank you to the research scientist who clarified the thimersol debate. Recovery? I'm not sure. I believe there are many syndromes that have a lot of cross over. Some children show a loss of abilities, some never get them.I'm not sure, from a clinical standpoint, that all of these children have the same thing. It is hard to look at these beautiful children and not wonder what could have been. Autism has taught me a lot about myself, about motherhood, love, hope, faith, perserverance. What I do know is that it take a lot of courage to do what my son does everyday: to speak, to look at faces, to leave a world that he is more comfortable with than ours. He does it out of courage and love. With his father, my husband, I am truly blessed.

Posted by: DrDonwheels | June 13, 2006 1:33 PM

Thank you for your comments. They are truly moving and insightful.

My sense is that life throws us some very difficult hurdles, and they are different for everyone. Some people have very few, and some people have more than their fair share. It really makes no sense at all, except that maybe, these hurdles give us wisdom that we would otherwise not be privy to. Wisdom that sometimes we don't really want. Whatever the hurdle is, I guess we should just try to figure out what the lesson is, and if possible, take it with grace, as you seem to have done. Truly, what else can we do when we are served such cards?

Posted by: Rockville | June 13, 2006 1:40 PM

The poem is called Welcome to Holland and I hate it. I have three kids, two on the autism spectrum. What we don't do is let it control out lives. We do the therapy--speech and OT--intermitently a shrink...but we do karate and dance and swimming and movies and the beach and birthday parties. We live our lives. We adapt certain things like for my middle kid we don't sing at his what? When he flaps and makes noises we tell him not to act freaky and he laughs and stops--when my older one goes on and on and on about military history and he misses the I'm bored social cue we tell him he's having an Aspy moment--he knows what that means and adjusts his behavior. We work hard to expect that our kids will achieve the same things normal kids do--they have chores and are expected to be polite--they do their schoolwork and homework and are told when they don't meet expectations. We don't expect that they will fail or that they can't do something until they prove over and over and over and over again that they really can not do it. You can spend your life wishing that things were different but there are parents of normal kids who wish the same thing--you can spend your life limiting yourself to the things "Holland" allows--or you can live your life. Autism is just a part of our life. It is never allowed as an excuse for not doing something--when they complain that life isn't fair we ask them who told them life was fair? IT's not but everybody has things that make their life hard and autism isn't the worst of it. I have my moments of self-pity as does everyone but focusing your whole life on one thing is never good...

Posted by: Chris | June 13, 2006 1:40 PM

Thank you for your comments. They are truly moving and insightful.

My sense is that life throws us some very difficult hurdles, and they are different for everyone. Some people have very few, and some people have more than their fair share. It really makes no sense at all, except that maybe, these hurdles give us wisdom that we would otherwise not be privy to. Wisdom that sometimes we don't really want. Whatever the hurdle is, I guess we should just try to figure out what the lesson is, and if possible, take it with grace, as you seem to have done. Truly, what else can we do when we are served such cards?

Posted by: Rockville | June 13, 2006 1:43 PM

For the last 20 years, i've noticed a new behavior disorder that gets discovered every 6 months or so... along with another pill to treat it. I've also noticed some parents that will rattle off some term for their child's mental disability that their doctor diagnosed when their child seems perfectly normal to me. Am I alone in this observation, or is something fishy going on?

Posted by: Father of 4 | June 13, 2006 1:57 PM

Hi everyone:
Thanks so much for reading my essay today. You've contributed so many perceptive comments, which is great because there are so many ways to look at autism and related disorders like Asperger's, PDD, etc. The many perspectives on this list are reflective of the real world of autism, a tangled, contradictory, often unfair place, with so much beauty and so many incredible people in it.
A couple of comments in response: Yes, saying I am an Autism Mom is just my way of reminding myself of my capabilities in the face of fear or new challenges. Since this is the Post, I'll share that I worked in Washington (at the Pentagon) and in government and aerospace before I had my son, and those stressful jobs were excellent preparation for the far more complex role of dealing with autism in my child. Luckily, I have many roles in my life, some relating to autism (speaking at conferences), some not. I've been able to recoup much of my own life, and it's productive and enjoyable, as life should be. Still, being the mother of my son changed me profoundly. It's like actually taking time to watch the flag wave on July 4th and realizing for a split-second how lucky you are to have been born in this country, despite its faults and flaws. Sometimes I feel lucky to be an autism mom, despite the problems, because of the way it enhanced my ability to love.
PS and to the coal miner's daughter--I am a coal miner's grandaughter from Virgina, another one of my proud identities!

Posted by: christina adams | June 13, 2006 1:57 PM


I know that when my wife told me she didn't want to have children, I experienced a loss, because I wanted them. But I wanted to be with her more. She was afraid to have children because it would mean a change in her lifestyle.

When she finally decided it was OK to have children, there was a loss because we knew that we wouldn't be able to get season tickets to the shows at George Mason, that we wouldn't get to see a movie that wasn't rated G, that our lives would be much more complicated trying to figure out how to get this child dressed in the morning so that we could leave the house. Also, because there just isn't as much "us" time for the two of us.

But after the adjustment (read "grieving") process, the gains far outweigh any losses we have experienced. When your child climbs up on the couch next to you, sippy cup of milk in hand, and snuggles up to watch the baseball game, or Fantasia, or Little Einsteins, or Singing In The Rain, or reading a book, there is no better feeling than that. When s/he writes her/his name for the very first time, there is no better feeling than that. When you are leaving for the day to go to work and your son/daughter comes running up to you for a hug and kiss and gives you a tight squeeze around the neck and a big kiss on the lips, there is not better feeling than that. And we don't even realize that we don't go to the Theater of the First Amendment or the Canadian Brass Band at George Mason, or anything at Ford's Theatre on a regular basis any more.

But the fact that I get to instill my values in this little person and, hopefully, to prepare him to make this world a better place gives me more sense of accomplishment than anything I have done or will do. I just hope his mom lets him play hockey .

Posted by: Working Dad | June 13, 2006 2:07 PM

Father of 4, I think there's definitely something to what you say. There are absolutely real mental illnesses and disabilities that need treatment, and its fantastic that our ability to diagnose and treat those disorders is improving, as the posts here tell.

But, I also think the pharmaceautical industry is getting very good at turning normal variations in behavior or physiology into illnesses that require expensive medication. For example, being short is now a medical condition that can be treated with human growth hormone. Are there circumstances where this treatment really is medically necessary? Definitely. But from what I've read, it's massively overprescribed for kids who would otherwise just be a little short with no medical problems related to that whatsoever.

Posted by: Megan | June 13, 2006 2:08 PM

I do think that we are over-medicated in this country. I grew up with 3 brothers. They were considered normal boys: energetic and active, and yes, sometimes disruptive. But they got through it without medications or special therapies -- just the firm guidance of our parents. Now, they are normal adults. I think had they been born 30 years later, they would have been labelled ADD or ADHD or whatever the popular term is now. And yes, I think that while there are very real conditions that require medication, the pharmaceutical industry has exploited our fears and anxieties over every little problem and profited through medicating our fears.

Posted by: the pharmaceutical industry | June 13, 2006 2:15 PM

The difference between kids that are "energetic, active, and disruptive" and kids that have ADD or ADHD is that the energetic, active kids typically become normal energetic, active adults.

People who have ADD or ADHD and aren't treated become adults who (1) are more likely to be unemployed, (2) are more likely to be involved in auto accidents, and (3) less likely to sustain stable marriages . . . for starters.

The real lack is specialists who really know what they are doing and can manage medications in a sophisticated way.

Posted by: THS | June 13, 2006 2:20 PM

To Worried Mom: Your ped was not ill-informed, she was right. There is no scientific evidence linking mercury to autism. Some people want to have something or someone to blame, which makes accepting the pseudo-science on autism easier.

Posted by: science | June 13, 2006 2:24 PM


Sorry you don't like the poem. After reading it, I came away with a different perspective. How many of your friends who had children the same time you did do you still associate with on a regular basis? If they all had "normal" children, they are probably going in one direction. And you have to go in a slightly different direction. The direction is not better or worse, just different. Their kids may be playing football; yours may be having speech therapy. Their kids may be going to social parties; yours may practicing piano. Some children may not be as capable as yours with the same diagnosis, depending on the level of their abilities. But that is typical with all kids, not just those who are more challenged.

I went to school with a mainstreamed autistic boy. He was brilliant. But we didn't ask him to play football in high school. My guess is that instinctively you steer your children towards things that you know they are capable of doing because those are the things they want to do. My son doesn't like to draw or write. I don't force him to do it. But you may be in a different situation altogether, in which you need to force them to do things just so they will try. In that manner alone, you are not in Paris with your old friends. You are in Holland. It's not better or worse, just different.

Posted by: Working Dad | June 13, 2006 2:31 PM

People who have ADD or ADHD and aren't treated become adults who (1) are more likely to be unemployed, (2) are more likely to be involved in auto accidents, and (3) less likely to sustain stable marriages . . . for starters.

Perhaps, but I think that the fact that some medication is touted for every conceivable condition causes us to expect that everything can be cured by medication. I know of a family whose son was diagnosed as ADD about 10 years ago, but they moved to Europe soon thereafter and the doctors over there could find nothing wrong with him. He is now doing very well in college, and is perfectly normal and well adjusted. His parents feel they dodged a bullet, because if they had listened to their American physician, they would have unnecessarily riddled their child with unneeded medications.

Posted by: Anonymous | June 13, 2006 2:34 PM

rockville & Megan - Thanks for your thoughtful replies. I appreciate them.
Working Dad - sounds like fatherhood agrees with you.

Posted by: Friend | June 13, 2006 2:36 PM

I think the over-medicating happens even more in the DC area where kids face so much pressure to succeed at all costs.

A relative of mine (from Northern Virginia) was planning to medicate her kid with Ritalin and, possibly, antidepressants, because his preschool teacher said that he would not be ready for kindergarten this year. He's a summer baby and just turned 5, so he's on the young side for entering kindergarten. When I suggested she just wait a year to let him mature a little more, she was aghast and dismissed it like I was trying to fail her kid.

Posted by: Anonymous | June 13, 2006 2:40 PM

A quick response to those who have asked about the prospects for autistic spectrum individuals: It varies greatly. My son is pretty high-functioning (he talks, makes some eye contact, can learn both cognitive and self-care tasks). We think his prospects are good, but no one can predict the future. We are prepared for the reality that he might not be able to live on his own or have a "normal" job. Others -- the once who require the most care and intensive intervention -- require institutionalization or round-the-clock care, and have very little ability to communicate.

Therapy and early intervention can make a HUGE difference to many autistic individuals. Sign language allowed my child to communicate with me for the first time at 2.5 years old. Speech therapy, occupational therapy (fine and gross motor control, hand-eye coordination, using tools), physical therapy (muscle tone), and developmental therapy (cognitive and physical development) can enable autistic children to make great strides. Such therapies can make the autism "go away" or "be cured," but they deliberately set out to teach skills that most of us assume are picked up automatically. The one-on-one time with a trained therapists can produce astounding results, but the autism is still there "underneath." Many autistic individuals who have managed to function very well in settings like college classrooms (such as the young lady profiled in the Oscar-nominated documentary "Autism is a World") need "autistic time" during stressful situations to do repetitive and soothing behaviors (for her it was pouring water into spoons -- for my son it's rapidly gesturing with his fingers to form numbers).

Because so many challenges for autistic children are social in nature, school and other group activities pose another learning hurdle. Again, therapies in the school group setting (a facilitator at circle time, for instance) can help to teach an autistic child how to respond to that social situation. The key thing is to remember that "normal" people read social cues automatically and get a sense of what's appropriate in different settings. One technique that's used with autistic people is "social stories" -- little narratives that tell them what to expect at the restaurant, at the airport, etc. It's important to prepare autistic spectrum folks carefully so that they don't get overwhelmed by novelty and stimulation, or frustrated by uncertainty about what they should do, how they should act, or why other people are doing what they are doing.

Regarding siblings: My husband and I decided to have another child in part to help my son (some call it "sibling therapy." Sure enough, my 22-month-old daughter has helped to teach my son all kinds of things -- humor (how they laugh together whenever mommy makes a mistake!), sharing, peer communication (he won't talk to most children, but he'll talk to her), and relationship dynamics. My daughter is an important part of making my son's life better, and I hope that she'll be very proud of that as she grows up.

For the commenter who doesn't believe in all these disorders: My mother didn't believe that my son had a disorder, either -- he was just idiosyncratic (liked to spin or line up toys rather than pretend with them, was a "late bloomer"). Now that he is older, she sees what "normal" five-year olds arelike (such as his cousins) and can very easily see that his differences go beyond quirks of personality. I encourage you to spend some time with children with disorders in a comparative setting -- school, playgroup, the park -- or talk to parents and doctors. This is not about making up disabilities to get sympathy or "medicalize" our parenting tasks. A recognition that this is a disorder that should be treated is the first and most important step toward getting the help that these people need to function.

Posted by: Donna B. | June 13, 2006 2:42 PM

I hand it to anyone who overcome difficulties in rearing their children. Regarding new "diseases," I think that in the past, some people were afflicted but never diagnosed. That doesn't necessarily mean that those same people should have been medicated, but maybe cognitive therapies or intensive work would have helped.

I have a brother who would have benefitted from assistance in overcoming dyslexia. Unfortunately, years ago, schools just thought you were lazy or recalcitrant if you didn't do your work. It was obvious that he was very intelligent, but he never could sink his teeth into learning the way the rest of us could.

Today, his issues would have been addressed. And while I am sure there are people with solutions in search of a problem, there are as many children who are under the radar, undiagnosed.

Posted by: Kate | June 13, 2006 2:42 PM

Father of four I agree that children are over prescribed medicine. My nephew and niece were both diagnosed with ADD. My mom told my sister in law that the drugs made them both zombies. My nephew wasn't doing well in school and when he took one of those standardized tests, it turned out that he was a genius and was just bored. It's really easy to label a kid this or that, especially by a teacher who is overworked and underpaid, but I truly expect a little bit more from our doctors.

Posted by: scarry | June 13, 2006 2:45 PM

Christina Adams,

I admire your support and devotion to your son. You are both truly blessed to have each other. As far as being a coal miner's grandaughter, no wonder you can do it all!

We are tough as nails and don't understand the meaning of the words, it can't be done. Good luck to you and your son.

Posted by: scarry | June 13, 2006 2:48 PM

Saying our kids are overmedicated does not mean that I don't think that disorders such as ADD, autism, etc. exist or that medication is appropriate for some kids/people. I just think that sometimes, a particular disorder becomes popular, and then kids who show the slightest symptom are grouped into a category that "needs" medication. And the pharmaceutical industry exploits this and profits from it. Just look at how direct to consumer advertising has changed the way drugs are prescribed across the board.

Posted by: Anonymous | June 13, 2006 2:49 PM

Just to clarify: My final comments above were directed at Father of 4 who questioned the popping-up of new diagnoses and new treatments all the time for kids that seem "perfectly normal" to him. Nonameposter, I'm as concerned about over-medication as anybody, and believe that you're perfectly correct.

Posted by: Donna B. | June 13, 2006 2:54 PM

Probably more info than anyone wanted...

Asperger's D/O, High functioning autism, Pervasive Developmental D/O, Non-verbal learning D/O, Semantic-Pragmatic language D/O, Sensory Processing D/O all are similar disorders with some degree of overlap between them. The areas of similarity and overlap are still somewhat ill defined and murky. Different diagnosticians with different areas of training will use the terms differents and preferentially. Unfortunately the school system and other agencies classify all of these as "Autistic spectrum" which is one of the reasons (not the only reason) for the dramatic increase in the number of children diagnosed with autism recently.

Asperger's - essentially normal verbal skills, decreased non-verbal communication skills, atypical social interactions (relating to above), intense interest in circumscribed topics. Generally normal IQ. Verbal IQ > Preformance IQ Sometimes delayed in gross and fine motor skills (ie late to ride a bike). Usually diagnosed later than other diagnoses.

High functioning autism - Delayed speech, but does develop speech, normal IQ (most autistics do not - even when tested using non-verbal scales) Preformance IQ > Verbal IQ. Normal motor skill development. Impaired reciprical social interaction, impaired communication. Lack of or marked delay in development of imaginative play. Stereotypical behaviors (ie spinning, twirling, rocking.)

Pervasive Developmental D/O - a bit of a lump all category for that which is severe, but does not fit into another category of developmental delay.

These diagnoses are clusters of symptoms and behavior patterns. One symptom does not a diagnosis make and behaviors may change and develop over time.

Non-verbal Learning disorders - a diagnosis made through neuropsychological testing with a specific pattern of assets and deficits that impact negatively on a persons capacity for social interaction and produce characteristic styles of communication. Included in this (which also overlap with some in above diagnoses) are deficits in tactile perception, psychomotor coordination, visual spatial organization, non verbal problem solving, appreciation of incongruencies and humor, as well as difficulty adapting to novel situations.

Posted by: Child Psych MD | June 13, 2006 2:57 PM

Today this blog is more related to my working life than to my mom life.

I am an outpatient pediatric speech therapist and at any given time, about one-third to one-half of the kids on my caseload are on the autism spectrum. They are among the most challenging kids I've worked with. I am really impressed with the parents of these kids. Whenever I am feeling drained by a 45-minute therapy session, I try to imagine what it must be like to be this kid's mom 24/7.

I've heard all the scary stuff about vaccines but once I really started reading up on it, I felt that it was all a panic with no real basis. I have an 18-month-old son who has been getting all his vaccinations on the recommended schedule. If he ends up having an autism spectrum disorder I don't think it will be because of vaccinations.

Posted by: speech girl | June 13, 2006 3:00 PM

My husband has mild ADD, his mother has somewhat more pronounced ADD, his sister and brother don't have it at all. They know this because they all underwent an extensive battery of tests that lasted about 8 hours. My husband is able to mostly deal with his ADD on his own, but he will take Ritalin from time to time. He took it for the GRE, for example.

He now teaches 7th grade and frequently runs into parents who want him to give their kid an easy time because the kid "has ADD." He makes no allowance at all for any kid who claims ADD - or any other personality disorder - without an MD diagnosis. And privately, he's pretty skeptical of many of those, too.

Chris, your Asperger's military history nut son could do very very well in a military history graduate program, and then could possibly do very well at one of the War Colleges. I've spent a lot of time around those guys - my dad is one of them - and I think that mild Asperger's may well be the rule.

Posted by: Lizzie | June 13, 2006 3:02 PM

Everyone, please continue to get your children vaccinated. There is currently no mercury or thimerosol in childhood vaccines. There HAS BEEN NO DEFINITIVE LINK shown between the rise in incidence of autism and childhood vaccinations. Far more likely reasons include: broader diagnostic criteria, decreased infant mortality rates, fewer children dying young...PLEASE, don't give in to the scare-mongers. Vaccines have and currently are safe for the vast majority of children. You would not blame the anesthesiologist if your loved one had a completely unexpected reaction to general anesthesia died (well, maybe you would, but it would't be the doctor's fault) and you should not blame vaccines for autism. THERE IS NO PROVEN LINK!!!!

Posted by: AWB | June 13, 2006 3:20 PM

The running commentary confirms in my mind that we are truly "one nation under therapy" - indebted to psychiatrists, psychologists, and the pharmaceutical and health insurance industries for our apparent inability to look at each person as an individual. Parenthood is wonderful if you avoid labels and can honestly see each child for his/her potential as well as his/her limits. The overly ambitious expectations of parents of autistic children are stoked by stories from parents who want to spread the word that they "succeeded" in "fixing their child" reflecting their self-imposed guilt of having "not gone to Italy, but Denmark instead." It's not about you, parents. Autism has fast become the disability most acceptable to the insurance industry, replacing bipolar, ADHD and ADD beginning in the 80s when the field of psychiatry decided to revamp its manual of "billing" codes. There is so much misinformation in this blog that at this rate, half the children in America will soon be "on the autism spectrum." And we will then have a generation of "autism moms" for the pharmaceutical industry to medicate because as they age, they will become lonely and disraught because their husbands and their other children felt pushed aside by their "martyr" devotion to the child with autism. And who will take care of that child, now an adult with the same socializing/communication problems, when the autism mom falls apart? This nation needs to get a hold of itself - we cannot continue to be "one nation under therapy" and raise well-balanced children if we adults are not well-balanced ourselves. This doesn't mean children ought to be institutionalized, although some should be. It means that a healthy mom with a healthy marriage and all around healthy relationships with her other children and everyone else in her world is the best thing there could be for the child with any disorder, including autism.

Posted by: Maggie | June 13, 2006 3:21 PM

Maggie said: "a healthy mom with a healthy marriage and all around healthy relationships with her other children and everyone else in her world is the best thing there could be for the child with any disorder, including autism."

Maybe so. But "avoiding labels," as you prescribe, in a lot of cases means not getting therapy and intervention early -- when it will do the most good. Mommy instincts aren't enough here. Professional help is needed. What I saw about my son through the eyes of professionals who understood autism was far different -- and far more enlightening -- than what I saw when I just looked at him as a loving first-time mother who couldn't understand why he couldn't talk. Please don't discourage parents from seeking the help of specialists and then getting the therapy that can make such a difference.

Posted by: Donna B. | June 13, 2006 3:28 PM

I think THS got it exactly right with this: "The real lack is specialists who really know what they are doing and can manage medications in a sophisticated way."

Like others have said, there are people who really need treatment for ADD and ADHD, but it take a lot of knowledge to understand the difference between a child who is energetic and disruptive and the child who really has ADD. The same could be said for mental illness as well. My mother is clinically depressed and has been for a very long time. Seeking treatment saved her life, and she will probably always need to be on anti-depressants. On the other hand, a good friend of mine in highschool went through some difficult times, and her mother asked her pediatrician to prescribe anti-depressants. The pediatrician did so, and kept her on that drug for over two years. When my friend started doing her own research, she discovered that that particular drug is intended for short-term use in extreme situations, and that 6 months is considered a long time to be on it. She switched drs and phased off the drug, and is fine. The psychiatrist she saw agreed that the medication was probably never appropriate for her, but the pediatrician didn't have the knowledge and experience to see that (and was most likely very influenced by the mother's reaction).

Posted by: Megan | June 13, 2006 3:29 PM

"reflecting their self-imposed guilt of having "not gone to Italy, but Denmark instead." It's not about you, parents. "

I don't see where you're getting this angle, Maggie. Every post I have read on this blog from a parent of a child with autism is about helping their child. Where is the guilt in that? Getting the help their child needs isn't making it about them; and talking about the challenges of doing that is entirely approriate in this context - it's a blog for people to talk about the challenges of balancing family life. Why are you so hostile towards these parents?

Posted by: Megan | June 13, 2006 3:36 PM

The doctor who first suggested a link between the MMR vaccine and autism is being charged with serious professional misconduct. He could lose his license. The doctors who completed the studies with him disagreed with his findings, citing inadequate research. The journal in which his studies were published have disavowed the article. The accusations are that he published inadequately founded research, failed to obtain ethical committee approval for the work, obtained funding for it improperly, and subjected children to unnecessary and invasive investigations.

All rigorous, thorough subsequent studies have shown no connection between vaccinations and autism.

The flu vaccine is the only vaccine that still contains thimerosal. Any parent can request a thimerosal-free vaccine from their child's pediatrician. Last flu season, our pediatrician had all thimerosal-free flu shots and ran out of the standard ones.

Posted by: Anonymous | June 13, 2006 3:37 PM

Hi everyone. Don't know if anyone mentioned this yet, but see below for a great op-ed piece from the New York Times (June 5, 2006)about the challenges facing parents of children on the autism spectrum.

Autism's Parent Trap


In recent weeks, three stories have hit the news with grimly similar plotlines: parents accused of killing their autistic children.

On April 12, in Hull, England, Alison Davies and her 12-year-old son, Ryan, fell to their deaths from a bridge over the River Humber, in an apparent murder-suicide. (A note was found in Ms. Davies's kitchen.) On May 14, in Albany, Ore., Christopher DeGroot, 19, was trapped inside a burning apartment. He died in a Portland hospital five days later, and his parents are charged with murder, accused of locking their son in the apartment alone. And on the same May Sunday, in Morton, Ill., Dr. Karen McCarron admitted to the police that she had, the day before, suffocated her 3-year-old daughter, Katherine, with a plastic garbage bag.

Family and friends have come to the defense of two of the parents involved. "Ryan was the focus and the purpose of her life," Alison Davies's sister told The Sunday Times, calling the double bridge jump "an act of love."

A friend of Dr. McCarron's -- a fellow member of her local autism-support group -- told a columnist for The Journal Star of Peoria, Ill., that Dr. McCarron had devoted her life to Katherine. "She never took a night off," the friend said. "She read every book. She was trying so hard, pursuing every lead."

Chilling words to any parent of a child with autism who remembers, as I do, reading every book, pursuing every lead and never taking a night off -- because autism feels like a war you re-arm yourself nightly to wage. The comments suggest the parents may have been trying too hard. Perhaps they were frustrated that their efforts did not lead to greater improvement in their children. That would not be surprising, because dramatic improvement is what too many parents are led to expect.

Clearly there is a message in the recent deaths about the urgent need to increase support for the rising number of families struggling with autism. Having an autistic child is estimated to cost a family $10,000 to $50,000 a year in out-of-pocket expenses for medical treatment, therapy and education. With 50 new diagnoses of autism in this country every day, support services are already too stretched to meet the need.

But as much as I'd like to fault government policy, I suspect it is not entirely to blame. There's another issue that hits closer to home and is harder for most parents of autistic children to be candid about. When your child is initially diagnosed, you read the early bibles of hope: "Let Me Hear Your Voice," "Son-Rise" and other chronicles of total recovery from autism. Hope comes from a variety of treatments, but the message is the same: If you commit all your time, your money, your family's life, recovery is possible. And who wouldn't do almost anything -- mortgage a home, abandon a career or move to be closer to doctors or schools -- to enable an autistic child to lead a normal life?

Now, as the mother of a 10-year-old, I will say what no parents who have just discovered their child is autistic want to hear, but should, at least from one person: I've never met a recovered child outside the pages of those old books. Not that it doesn't happen; I'm sure it does. But it's extraordinarily rare and it doesn't happen the way we once were led to believe.

According to her friend, Dr. McCarron was in despair in recent weeks because Katherine's language had regressed markedly. Every parent of a child on the autism spectrum knows this feeling: I've done everything possible; why isn't he better? The answer is simple: Because this is the way autism works. There are roadblocks in the brain, mysterious and unmovable. In mythologizing recovery, I fear we've set an impossibly high bar that's left the parents of a half-million autistic children feeling like failures.

I don't mean to sound pessimistic about the prospects for autistic children. On the contrary, I see greater optimism in delivering a more realistic message to families: Children are not cured, but they do get better.

And better can be remarkable. At 10, my son is a far cry from the toddler who melted down when the sand was the wrong texture for drizzling. These days he embraces adventure, rides his bike, and repeats any story he tells five or six times. I remember thinking maybe we'd laugh someday at the lengths we went to when we were teaching him language -- the flashcards, the drills, the repetitions. Now he's 10 and talking at last in his own quirky ways, and we don't laugh about the drills (though we laugh about plenty of other things). Language is a victory. So is connection and purposeful play. So are the simpler things: a full night's sleep, a tantrum-free day.

Parents working toward these goals will one day be surprised and delighted by their children's funny new obsessions, odd fixations, and tentative but extraordinary connections with other children. Being more realistic from the start might make it possible to enjoy the journey and to see it for what it is: helping a child who will always function differently to communicate better and feel less frustrated. To aim for full recovery -- for the person your child might have been without autism -- is to enter a dangerous emotional landscape. For three children, the disconnect between parental determination and limited progress may have been lethal.

Cammie McGovern is the author of "Eye Contact," a novel.

Posted by: Leslie | June 13, 2006 3:42 PM

From Christina:
Just a brief note on the vaccine issue--Truthfully, there are many ASD children who were very impacted by vaccines. And by that I do not mean only thimerosal (the vaccine preservative composed of nearly 50% mercury) but also the amount, type and early frequency of vaccinations. There is increasing and respectable scientific evidence to link immune system dysfunction to autism in some cases. I just interviewed several mainstream university research scientists who made many of the potential linkages clear to me. There are also some children who do not seem to be impacted by vaccines. Only a careful family medical history taken by a doctor or professional specializing in autism can predict if your child is at risk. I have seen and counseled hundreds of families and although I am not anti-vaccine at all, I think they need to be given in a more careful, methodical manner than the one-size-fits-all way in which they are currently administered. I wrote a newspaper essay about the immune connection and it is on my website if you are interested in reading it ( Vaccines have done more good for the world than we can ever calculate, but they need to be given more carefully than current practice dictates.

Posted by: christina adams | June 13, 2006 3:49 PM

Father of Four: My comment to you and others is that the child that seems perfectly normal to you for the one hour or so you're with the child is probably not the child their parents see every day, all day. My 18 month old son has been in Early Intervention for 2 months now - he will be tested for autism within the next six months - and we (mom and dad) have seen differences in him already. There are probably not many worse things than knowing in your gut that something is wrong with your child and then having to fight to have someone acknowledge your concerns and then provide what might be an answer. My son was immediately accepted into the intervention program to the shock of almost all in our family. Most thought I was an overprotective parent, I should let my child develop at his own pace, you name it - I may have heard it. What I will never have to regret though is that my son is getting help early. To any of you who wonder about your child, there are programs who will evaluate your child for free.

Thank you to those parents who have shared stories of their child's successes and how they cope. I hope we will be blessed as well!

Posted by: Patti | June 13, 2006 4:01 PM

"Truthfully, there are many ASD children who were very impacted by vaccines. And by that I do not mean only thimerosal (the vaccine preservative composed of nearly 50% mercury) but also the amount, type and early frequency of vaccinations."

Exhaustive, extensive, scientific studies have disproven any connection between vaccinations and autism. Anecdotal experiences are not a sufficient basis to make such claims.

Posted by: Anonymous | June 13, 2006 4:13 PM

I'm not saying or not saying that vaccines can or do cause autism. However, when the doctors hand you a sheet that lists the side effects that they know can happen, it makes you wonder what else can happen that they don't tell you about. By them I mean the phrama companies.

Posted by: scarry | June 13, 2006 4:25 PM

I keep hearing that there is no proven link between thimerosal and autism. Yet someone in the middle of the night snuck a provision into the legislation that created the Department of Homeland Security a provision that effectively immunized (no pun intended) the manufactures of thimerosal for lawsuits. The congressman of staffer who put the provision in the bill has not been identified to this day. The Justice Department also sealed all documents relating to vaccines and thimerosal as matters of national security right after the bill became law. You can't quote studied that have been placed in the old 'memory hole'

Posted by: 1982 | June 13, 2006 4:26 PM

This is for autismmom. We did Applied Behavior Analysis as developed by Lovaas. Both my husband and I tend to be data-based and it was the only therapy we could find that had hard data backing it up. Granted it was expensive (we went into serious debt) and granted it was hard, but I wondered if he had had cancer if people would have balked.

It sounds like the author of this article implemented something similiar to what we did. Yes, we did the one-on-one. In my opinion though the best work was done outside of that. He could not get more milk at dinner or anything else he wanted unless he communicated at whatever level he was at. Starting out that meant touching his nose. That progressed to "ca" - meaning the cow on the front of the carton to "mik" to "milk" to "more milk" to "more milk please" - you get the picture. Once he started talking we enrolled him in a private pre-school (with our nanny attending) so he could be around normally functioning kids. We fought long and hard with the school district. The summer before kindergarten and first grade I set up a kindergarten in our home, invited all of the neighborhood kids (on the premise that he was an only child). The result was that he had a best friend and no aide in first grade and has not had therapy since. He still has no idea of his diagnosis though we know we will have to tell him someday. We did the therapy with the help of a once per month visit from a psychologist trained in the method. Throughout all of this both my husband and I worked because we had to have the money.

We know we were extremely fortunate - however I think we paid our dues since I remember doing 2 hours of one-on-one with him prior to going to church on Sunday mornings. The first year we even did his therapy on Christmas. Like the mom wondering about the future of her child we felt compelled since research has shown that developmentally challenged individuals start passing away from neglect when their parents pass away. As you can tell, I could go on and on. My prayers are with all parents of challenged children.

Posted by: mom1 | June 13, 2006 4:26 PM


You go girl! I was told the same thing about our son. I still remember the day he first said "mama" and ran into my arms - about 2 months after starting ABA. I was told we were being cruel. I was told I would be there to take care of him. I've heard all the stories.

Take no guff, take no prisoners. Remember, as his mom you know him best!

Posted by: mom1 | June 13, 2006 4:31 PM


I was once like you. I poo-poo'ed people who claimed they had food allergies ("allergic to wheat? what a nut!"); tsk-tsk'ed at those who prescribed meds to their kids ("what selfish people to not let children be children!"); scoffed at anyone backward enough to question scientific miracles like floride, vaccines, and preservatives; and felt strong and superior to anyone who needed therapy to cope with life's problems.

After eight years on the autism train, I am not nearly so smug as I once was. And neither should you br, or anyone else who has not dealt with this disability firsthand. Watching my son's battle with autism is like watching him fight not to go under and drown every single day of his life.

Posted by: S.T. | June 13, 2006 4:42 PM

Worried Mom: You are RIGHT to question them. As a parent you have to outweigh the risks and benefits for everything that pertains to your children. Receiving immunizations shots is just one of them.

Personally if my pediatrician said that to me, I'd change practices. You need to do your homework, I did and I have my own immunization schedule that is on file with our pediatrician. The CDC schedule is just a RECOMMENDATION.

I thank God every day that nothing happened to my 3 year daughter when I blindly followed the herd. When I found out I was pregnant with a son, I was really concerned because I read that boys are more suspectible. My 6 month son will NOT receive the majority of the recommended shots.

Alot of what we read about breakouts is only half of the story. Children still get the diseases even when they receive shots, they are not 100% effective or provide life long immunity. Women who get the some diseases actually pass on antibodies to their children in the womb. A generation of female children who will not get sick, will not be able pass on antibodies to their children. It's really a scary thought. The majority of the diseases are not life threatening. Again, it is our jobs as parents to outweigh the risks and benefits of immunizations.

Also, when people tell you that your child will not be allowed in school, they are wrong, not well-informed or trying to intimidate you. Again, you need to do your homework and know your rights, I'd recommend you starting with

Follow your instincts, good luck and good job!

Posted by: rbd19999 | June 13, 2006 4:46 PM

Question: Has there been any connection between autism and consuming high-mercury fish, like tuna and swordfish, during pregnancy? Some of the comments today made me wonder what is going on with the increase in diagnosed cases......By no means do I mean to imply it's the mom's fault. It's just alarming that the % has gone up so drastically, and I'm wondering what could account for it...

Suggestion: There is a fantastic article on that discusses the possible connection/historical connection between thimerosal and autism. If you don't subscribe to the site you can watch a brief ad and then read the article for free. I strongly recommend it to those convinced and unconvinced of the link, and you can make up your own mind:

Posted by: Ingrid | June 13, 2006 4:53 PM

To all those parents out there who recklessly disregard your children's health -- and public health -- by not having them vaccinated ... I hope your child *does* get sick as payback for your boneheadedness.

Posted by: Ph.D. | June 13, 2006 4:56 PM

To all those parents out there who recklessly disregard your children's health -- and public health -- by not having them vaccinated ... I hope your child *does* get sick as payback for your boneheadedness.

What an awful thing to say!! And I believe in vaccinations. But I would NEVER wish a child to be ill because I disagreed with the parent's views. PhD, you need a lesson in compassion, and apparently, your degree has given you nothing in terms of human kindness. What you said was very mean and unhelpful.

Posted by: Anonymous | June 13, 2006 5:06 PM

PhD: the point is NOT that you don't get your child vaccinated, but that you get your child vaccinated with single-use bottles of the vaccine, so there is less mercury in it. What is your PhD in, cold-heartedness? wow.

Posted by: FergalMcDergal | June 13, 2006 5:15 PM

I had three years of behavioral therapy when I was a child, although I was never told why. I recently obtained the therapists' notes, and after some research, concluded that I probably have Asperger's. The defined symptoms matched up so well with the notes and with what I know about myself. It was like meeting someone who already knew all about me. (I had no idea that there were other kids who read encyclopedias for recreation.)

According to my therapist, my parents and my teachers were continually frustrated with my lack of social skills. No one suspected that I might be on the autism spectrum, partly because my reading skills were above average. Do you think my parents would have had an easier time if I had been diagnosed as having Asperger's?

Posted by: asperger's adult | June 13, 2006 5:21 PM

To Asperger's Adult:

Some of the kids I see for speech/language therapy appear to have Asperger's or PDD or autism, but they have not been diagnosed. I always recommended an evaluation and sometimes the parents ask me what good it would do to get that diagnosis or label. My response is that it will help them to understand their child and can also make additional services available.

Maybe if Asperger's had been better understood back when you were a kid, and you had been diagnosed with it, you could have been in some social skills groups for example.

Posted by: speech girl | June 13, 2006 5:43 PM

To those commenters who are angry at parents for questioning vaccines (especially Ph.D., who was just being mean), I agree that vaccines are a very important public health tool, and I think that many of us have lost sight of how horrible some of those diseases are. However, I still think it is every parent's right and responsibility to be informed about the risks and benefits when the vaccinate their child. Vaccines are safe for the majority of children, but there are risks. In addition, although I do think that the thimeresol - autism link is tenuous at best, the fact that nobody at the FDA realized how much mercury was being given to children in the total vaccine schedule is outrageous, and it to me demonstrates that the FDA is not as rigoruous in reviewing vaccines and in thinking about the potential impacts of the entire recommended schedule (not just the individual vaccines) as it should be.

We have had our son vaccinated but did not follow the schedule; based on our research about the risks of illness and the impacts of vaccines we spread some of them out and delayed others entirely. I could find no good public health or data based reason that my son should have gotten a vaccination for Hepatitis B one hour after birth, as an example.

This issue is prone to scare-mongering on both sides of the debate, and unfortunately parents are left to sort it out for themselves.

Posted by: Megan | June 13, 2006 6:24 PM

People trying to "sort it out for themselves" might want to start w/ the article at the link below. It's just a newpaper article, but it refers to numerous Institute of Medicine studies, some conducted here and some in other countries.

See especially what they have to say about what happened when the rate of measles went down in the UK.

Megan is right in saying that we've forgotten how bad some of these diseases can be. My sister, who contracted polio as a baby in 1953, just before the vaccine became available, would certainly agree.

Of course, we should look into these issues ourselves, and new findings are always possible, but the IOM is a pretty reliable source.

Posted by: THS | June 13, 2006 6:36 PM

"Megan is right in saying that we've forgotten how bad some of these diseases can be."

I remember being judgmental when a colleague stayed home when her high school aged daughter had chicken pox. What I didn't know at first was she was seriously ill with the disease. (My memories of having it simply included being itchy and uncomfortable, not the high fevers and weakness that this young girl experienced).

My older child had chicken pox as a small child, but when the vaccine became available, I made sure my daughter took it. The pediatrician explained to me that chicken pox alone wasn't so bad, but when a cycle of strep was particularly virulent, and the patient also caught chicken pox, serious problems could arise.

I think the anti-vaccination folks benefit from herd immunity. I have no problem if someone has serious objections to vaccinating their children, but at the same time, if EVERYONE were to follow their lead, we'd all be spending a lot more time and money fighting these diseases.

Posted by: Kate | June 13, 2006 7:59 PM

"To all those parents out there who recklessly disregard your children's health -- and public health -- by not having them vaccinated ... I hope your child *does* get sick as payback for your boneheadedness."

Every little bad thing you say or do, comes bouncing right back to you.

Mrs. Scarry-circa 1985~ Be nice

Posted by: scarry | June 14, 2006 7:59 AM

I hate to be ugly about the "Denmark" story, but sometimes you don't miss Paris and arrive in lovely but slightly different Denmark, you wind up instead in Afghanistan. The Denmark story might be been appropriate for a mildly disabled child, but the world of severe disability isn't so pleasant as a small change of 1st world European locales.

Posted by: I hate that story | June 14, 2006 9:41 AM

To Ph.D,

First, classic that you would use your "name" as "Ph.D.". Second, do you have children? Do you understand how vaccinations are directly entered into the celluar level of our bodies verses being filtered through our bodies that are designed to naturally fight off diseases? Through our nose, lungs, kidneys, liver, etc?

If you do have children I'm sure they have received all of the vaccinations and if mine did get sick with a disease, you realize there is no guarantee that your child is protected, right? You realize the reason on the CDC recommended schedule has boosters is because those vaccinations do not provide life long immunity, right?

And since you are a Ph.D, surely you are aware of the vaccainations for the Rotavirus, not a deadly virus but can lead to severe dyhydration was pulled from the recommended schedule back in 1999 "due to risk of intussusception, a rare cause of intestinal obstruction. The new vaccine hasn't shown a higher risk of intussusception in studies and will be closely monitored by the CDC and FDA." (, right? Good, because I bet the majority of non-Ph.D parents don't.

That was in 1999, seven years later they want to put the Rotavirus vaccinations back on the recommended schedule - I wonder how long those "studies" were, because the last VACCINATION did cause several deaths.

Seriously, Ph.D. or not, please provide some real insight because your comments aren't helpful.

Posted by: rbd1999 | June 14, 2006 9:43 AM

good for you Rebecca. Tell him how it is.

Posted by: scarry | June 14, 2006 9:54 AM

Blair Burton, thank you for speaking up for the siblings of special needs children. So often, sadly, there is some neglect as the parents "try everything" to cure, fix, or rehabilitate the child, especially in the early years of the diagnosis. I was in the situation of being the only (and older) sibling. I wasn't made to feel I had to do a lot to help my sister, and I had a strong feeling of loyalty and desire to help her, but our family life suffered greatly as my parents did their best to help her and to find ways individually to cope with a mentally disabled child. I did get left out. I did hate that we had to be "different" from other families. Maybe my parents didn't communicate with me well.

I don't blame my parents, and actually, they did a great job with my sis. But when my friend's daughter was diagnosed with a severe neurological disorder at age 2, many parents in a support group urged her and her husband, "Have another child! You need a 'typical' child to help balance you." I was furious with these people. I told my friend, "Well, I'll be honest with you. I think it's a terrible and selfish idea. I was the older child. You know in this instance that you are bringing a child into a situation where the older sibling will need a great deal of lifelong help and support -- physically, emotionally, financially, etc. I just don't think it's right."

Keep in mind that my friend was already 43 and her husband was 62. They were in financial straits and my friend was out of work. My friend did decide that it would not be a good idea for them to have another child, especially once she got into that harrowing and heroic routine of therapies, special schools, and at-home followup work with her child. She sees clearly that she and her husband simply would have no time to give another child.

And also, the idea that the additional "typical" child would somehow balance the parents is just selfish. Like Dr. Phil says, "A child should not be born with a JOB," and the job here would be to give the parents the "experience" of raising a "typical" child. (And who could guarantee that anyway, except God?) I am fine with having a disabled sister and it's brought life experiences to me I would not have had. On the other hand, I missed some experiences I would have had with a typical sibling. For all those wonderful siblings of special needs people that are so often commended, there are many unsung who simply do and did their best and got along. It doesn't make you any more special than anyone else, and sometimes I get tired of people making it out that it's a "gift" to have these things in our lives. What happens to us is just LIFE, and we all have things to overcome and to be grateful for, at different stages of our lives.

One more comment: Sometimes I think there are so few SAH "autism dads" because they are not allowed to be. My friend mentioned above wants to get back to work because her husband is near retirement age and she has the "higher earning potential" of the two of them. What I see, however, is that -- although she DOES want to get back to work -- the therapists and social workers all tell her that the best thing for her daughter is to stay home and work with her intensely. When my friend talks about her husband taking over, the therapists have flat out told her it just won't be as good as the mom. This is because, right now, the husband isn't doing the best job of the followup therapy, but I think it's wrong for my friend and all the therapists to think he would not do his best IF he were given the chance to take on the primary caregiver role. Sometimes the moms push the dads out of the picture by demanding too much, and I think this is a root cause of the divorces. My friend is very demanding and particular about the husband should work with their daughter, and I've seen it push him away rather than bring him into the circle of care. I fear it will soon push him out of the marriage.

Posted by: Lori | June 14, 2006 10:07 AM

From that NYT article: "Family and friends have come to the defense of two of the parents involved. "Ryan was the focus and the purpose of her life,"... A friend of Dr. McCarron's ... told a columnist for The Journal Star of Peoria, Ill., that Dr. McCarron had devoted her life to Katherine. "She never took a night off," the friend said. "She read every book. She was trying so hard, pursuing every lead."

I think this is a situation that should be avoided at all costs. The mothers of special needs children MUST develop a life outside of being "autism mom". It's not easy. My own mother saw early in my brother's life that she could fall into the trap of being "only" mother to this "handicapped" child (and me) or she could find a way to have some life of her own while giving us her love, support, and guidance. Thank god she made that choice. She is now in her late 70s and my bro is 45, happy and functioning well. We had a good childhood and I see that my mom's choice to NOT give up everything to trying to save or cure my sibling was a healthy and sane one. Although she spent a lot of time making sure my brother got good services and needed educations, mom also became a community leader in other areas and had many interests outside of taking care of her family.

Today things might have been different. She (and dad) might have felt tremendous pressure to use all of the therapies, diets, and special programs, which would have left her and my dad with little time to give us just a normal family routine of school and vacations and fun outings. I do not feel that my bro's care was slighted in any way and I don't think he does either. Ultimately, parents of special needs children need to find that balance of care and therapy and "normal" life, especially when there are other children in the family.

Posted by: Balance is best | June 14, 2006 10:46 AM

Great comments, Lori. If you'll look up-thread, you'll see that I posted some similar, but much less eloquent, comments yesterday.

Posted by: THS | June 14, 2006 10:46 AM

P.S. I know that many moms and dads need a great deal of financial and emotional support to find the balance I spoke of above. We need to help them in any way we can, including volunteering and lobbying for increased budgets (not budget cuts, as has been happening) for the many programs and services offered in different communities.

Posted by: Anonymous | June 14, 2006 10:50 AM

"I think the anti-vaccination folks benefit from herd immunity. I have no problem if someone has serious objections to vaccinating their children, but at the same time, if EVERYONE were to follow their lead, we'd all be spending a lot more time and money fighting these diseases." - Kate

I totally agree. That's why I think it's important when parents think about vaccines to distinguish between illnesses that are primarily childhood illnesses and that are highly contagious, like measles, for example. These are the types of diseases where vaccines can be incredibly beneficial, but mass participation is essential. On the other hand, an illness like Hepatitis B, which is not primarily a childhood illness, and which is spread through exchange of bodily fluids (primarily via sex or needles, but also use of other personal items such as toothbrushes) does not spread in an epidemic fashion; therefore, deciding not to follow the recommended scheduel for Hep B has a very different implication for your child and for public health and not getting MMR, HiB, or some of the others.

"the therapists and social workers all tell her that the best thing for her daughter is to stay home and work with her intensely. When my friend talks about her husband taking over, the therapists have flat out told her it just won't be as good as the mom. This is because, right now, the husband isn't doing the best job of the followup therapy, but I think it's wrong for my friend and all the therapists to think he would not do his best IF he were given the chance to take on the primary caregiver role." - Lori

Wow, that is really sad. I think it's inexcusable for the therapists to say that. I know when I was home and my husband was working, my husband was not as adept at some of the child care stuff simply because he wasn't around all day. Now that we've switched roles, and my husband is the primary care-giver, there are many things that he has a better handle on. Learning to do things takes time and practice, it is not an innate ability that women have and men don't.

Posted by: Megan | June 14, 2006 11:31 AM

Megan, thanks for seeing my point about the SAH dad being a caregiver. The therapists have told my friend twice now that when she took a week or two to do consulting work (trying to get back in her field) and the husband took over, that her child "regressed". I think this was wrong of the therapists. They are all participating in pushing the dad out of the caregiver circle rather than helping him to participate more and be more confident and skilled. I have not commented on this to my friend, but I could say that if I had been the one to take over the therapy co-work and all that during those weeks, I wouldn't have done a great job either. Like you say, her husband has not practiced it all as much, so perhaps he feels insecure. It doesn't help to have therapists (all women by the way) going behind his back to tell his wife that their child "regressed" while in his primary care. Sigh. Perhaps he won't be a great SAHD when he retires, but it might give him a whole new lease on life and a chance to experience something totally new and rewarding. I think he has the right to try. Ultimately, will a little bit less intensive treatment damage the child's overall progress? I don't think so. She has a neurological disorder and not a good prognosis. There's no "cure" there, there's only "better quality of life".

Posted by: Lori | June 14, 2006 11:44 AM


It's inaccurate to say that rotavirus is not a deadly disease. Because of its severe diarrhea, it yearly kills 20-60 children in the US and 500,000 children worldwide (see cites below). It is true that the vaccine approved in the late 1990s caused intussusception in one in 10,000 recipients, and it was pulled on that basis (thereby allowing rotavirus deaths to continue unabated). Since then, a new type of vaccine has been widely tested and not found to be associated with intussusception or any other moderate or severe reactions. In fact, during the recent study, infants who received the new vaccine had a lower risk of intussusception than those who did not. I do hope that people will not let fears associated with the old vaccine stop them from adopting the new one.

Posted by: Tom T. | June 14, 2006 11:57 AM

To the extent that the new rotavirus vaccine is revised and safe, that's wonderful, and thank you for the info, Tom T.

But I take issue with this statement: It is true that the vaccine approved in the late 1990s caused intussusception in one in 10,000 recipients, and it was pulled on that basis (thereby allowing rotavirus deaths to continue unabated).

Based on your figures, the vaccine was causing more cases of intussusception than the disease was causing deaths IN THE US. 20 - 60 children out of 4.5 million babies? That's a lot less than 1 in 10,000 by my math. I don't have a number handy for the world population of babies, so I can't say anything about that. But it sounds from your figures like pulling the vaccine was the right thing to do in the U.S. Vaccine manufacturers, doctors and the FDA do make mistakes, failing to acknowledge that weakens the argument for vaccines.

Posted by: Megan | June 14, 2006 12:11 PM

Thank you Tom, I'll check out the information. It is so very important to keep children well hydrated when sick with any illness, diarrhea or high fever. It's the most proactive action to take but don't ever hesitate to take a child to the ER if there is any doubt about dehydration.

Posted by: rbd1999 | June 14, 2006 12:21 PM

"Sibling therapy"? OMG. Please do not have children to be little therapists to the older special needs child. Don't have them to harvest their organs (kidney donor) or cure a sibling's leukemia. I agree with Dr. Phil as the poster mentioned. It's totally unfair for a child to be born with the intention that he/she will somehow help and older sibling. My oldest brother is autistic and I love him dearly. However the thought that perhaps I would have been conceived as his little therapy partner turns my stomach. Siblings of special needs children deserve their own lives. If you spend hours and hours taking care of your special needs child, please also devote time and resources to getting your other child(ren) out of the home/therapy environment and into more normal situations and homes where they can be free of the "special needs" routine from time to time. Staying at my aunt and uncle's house saved my sanity when my brother and I were little kids and gave me some respite from the neverending situation at home.

Posted by: Not a job for children | June 14, 2006 2:03 PM

I'm sorry but I disagree when people benefit from herd immunity. If your child has a special reason for not being vaccinated, great, but otherwise, children in schools around my child should be vaccinated. Some of the community shouldn't have to take the risk of getting their children vaccinated while others do not.

Also, right now, the mumps are working their way across the Midwest because a camp counselor from England wasn't vaccinated and brought it here. That's not cool. I don't know all the affects of immunizations; however, I don't want my daughter to catch a disease.

Posted by: scarry | June 14, 2006 3:13 PM

Hey I just wanted to comment in defense of the therapists who told a mom that her child had regressed when the dad was taking over her role for a couple of weeks.

It is very common for kids to have a setback or regression when there is a change in the normal routine. Often they will get back to where they were before once they adjust to the change.

Since none of us heard exactly what the therapists said to that mom, we can't be sure that they were really blaming the dad and not just the change in routine.

Posted by: speechgirl | June 14, 2006 5:18 PM

I greatly enjoyed this blog (and reading the subsequent posts). I do, however, take some issue with the use of the term "recovery" as it pertains to autism. While kids with ASD can certainly improve (even improve dramatically) with the aid of effective intervention, ASD is not an "illness" from which one can "recover". As a previous poster noted, ABA (and its close cousins) is the only research based intervention thus far. Yet, there are so many "cures" and stories floating around that describe the recovery of kids with ASD. To put it bluntly, anyone who actually cures a kid with ASD would win the Nobel and, in turn, impact the lives of millions of others. Unfortunately, it's not yet possible. We can all remain hopeful!

Posted by: AnotherAutismMom | June 14, 2006 5:22 PM

I understand that you want to defend the therapists. I was not present when they spoke to my friend, the mom, but the mom reported it to me directly. They were definitely not blaming the change in routine, they were telling my friend that her daughter had "regressed" because the mom was not there the husband/father was not participating as fully as the mom does in the therapy. (And I know that she goes all out!) This was part of a discussion about the father quitting work to stay at home with the child while the mother goes back to work. The therapists are not very supportive of this alternative, mostly because my friend is heavily involved in the care and therapy. She gives 100%, while perhaps her husband gives 85%, but he's never been in a situation where he didn't have to have one ear on the cellphone in case his work called.

Social services is strongly suggesting that my friend not work at all. They do not seem to feel that EITHER parent would be fine as the stay-home caregiver. It is very clear that everyone thinks the mother is best, even though she is younger, can work many more years, and could possibly get a job that pay $40,000 to $50,000 more than her husband's, an income that they desperately need, not for luxuries but to keep a roof over their heads and treatments and therapy for their daughter. Every special needs child presents many many difficult choices and dilemmas.

Posted by: Lori | June 14, 2006 5:33 PM

Scarry, I think I generally agree with you. My concern is that there are some vaccines making it onto the schedule that do not require or confer herd immunity (like Hep B, which I keep harping on, but that recommendation is insane to me), and the recommendations don't seem to distinguish. Also, I think there is a real concern that the FDA's evaluation of what risks are acceptible for all children is not as rigorous as it should be. Personally we've erred on the side of vaccinating for the other diseases, but I do think it's something parents should keep an eye on.

Posted by: Megan | June 14, 2006 5:34 PM

I just wanted to comment with another interpretation of the term "Autism Mom" when used by a parent to describe herself. To me, it is analogous to the term "Soccer Mom" when used by a parent to describe herself (i.e., in the positive sense). Literally, rather than spending a portion of parental time (after school and/or on weekends, but, note, not necessarily ALL time) driving to sports practices and games, the Autism Mom may instead spend her parental time driving to therapy offices, networking with other Autism Moms/Dads in waiting rooms, and learning skills related to autism rather than soccer. To me, both terms, when used by parents to describe themselves, are labels of pride, not victimization or martyrdom, and merely reflect an active role in providing their children with opportunities that they feel are important for their development. Much of the advice I have found offered to soccer parents applies equally to autism parents (for example, "learn the game" and give the children "unconditional encouragement and love"; and "promote a child centered approach . . that provides for child-parent bonding, team work and friendships").

Posted by: Another Mom | June 15, 2006 12:10 AM

Thimerosal is STILL on many shelves! Don't be fooled by "last production" dates. Check with your doctor! Don't assume it's been pulled. I know of someone within the last year who checked and found her pediatrician THOUGHT the Thimerosal had been pulled, when in fact, it was not.

Posted by: MoJo | June 15, 2006 12:40 AM

Yeah Megan, it's like what I said before and my mom agrees, that we just don't know all the side effects, but most of the vaccines are still better than some of the diseases.

You know my dad was born right around the end of the depression, no money for anything let alone shots! He said he was around all the diseases and never caught one, but I think he is very lucky and an exception.

It's all so scarry. It seems like everywhere you look there is some kind of posien, like hormones in milk and antibodcts in meat. Boy the world has changed.

Posted by: scarry | June 15, 2006 8:01 AM

yes, I spelled scary with two r(s). It's why I need a good editor!

Posted by: scarry | June 15, 2006 8:03 AM

I am the mother of an autistic boy turning four in about three weeks. I have two older children ages 18 and 14. All three have the same father - my husband. My youngest - my autistic boy - was conceived accidentally. After much torment, we decided not to terminate the surprise pregnancy but at 4 months into my pregnancy, my husband, who had a better income than mine, was diagnosed with brain cancer and given 18 months to live. I spent the rest of the pregnancy period dealing with surgery, radiation, chemotherapy, getting into trials and treatments at NIH and Johns Hopkins, keeping my position as a goverment attorney, and dealing with the fears and other issues of my then 10 and 14 year-olds. We had very very little family support. I am wondering what link there may be between stress during pregnancy and ASD spectrum disorders. My son was diagnosed at about 2 years old. I still have my job but that's mainly due to the great flexibility and understanding provided by my supervisors and coworkers. In addition to struggling with the grief of losing my husband to whom I was married for 20 years, I have a daughter in college with issues, a son about to go into high school and he has many many problems, and my autistic 3 1/2 year old. I have had no choice but to do only what I can. I simply cannot follow special diets and I am so tired and lonely every day that I cannot arrange everything that needs to get done in a way that forces my son to try to communicate. I feel like my son would have been better off with someone who could stop working outside the home and throw herself (or himself) into everything currently being used to improve the outcome of those with autism. I love my baby boy but when I fully realized and accepted that he was autistic I really wanted to give him up for adoption as a way of saving and doing the best not only for him but for the other three of us. But I didn't. Everyday is an unbelievable struggle and when I read about the efforts being made by other people to help their autistic children I feel like a failure. Anyway, I can't help but think there may be a possible link between prenatal stress and ASD. Does anyone know anything about this?

Posted by: Lois J. Gregory | June 16, 2006 12:46 PM

Lois, please don't feel like a failure! You are not. You're doing your best and you love your son. There are so many therapies, diets, programs, treatments out there that most parents of special needs children feel like failures if they don't "try everything" and exhaust themselves and their whole support structure. There is really no way to know what will "work" or how well it will work or to what extent you can teach your child or improve his chances or better his abilities.

I am so sorry that you lost your husband. That must have been devastating.

Do what you can, give time to your other kids, and try to find support groups and friends who will simply listen and perhaps give you some time out now and then. Your son's quality of life will be what it will be. If he seems happy or at least stable, then you're doing a great job.

My younger sister (who passed away recently) had special needs, and it was in a time when Special Education barely existed. Lately I told my mom, after seeing all that today's parents go through to help their special needs kids, that I'm sorta glad we had it so easy. We didn't have to try so many special programs and therapies, although when my sister was older we tried one that included a special diet. Like you, my mom lost her husband (my dad) when my sister and I were young. Luckily, she had the blessing of a large family and a church circle.

My sister might have been better off (Hey, I would have been "better off" if I'd had the Internet when I was in college.) if she had had access to all the things out there now, but she had a great quality of life and was deeply loved and she gave so much love to everyone. There is no doubt about that, so really, just do what you can and love your son and make the best life for your family. Don't worry if you can't jump on every passing movement. What's out there might make a difference in some way and it might not. Simply live life in your own way and don't ever think that you're failing.

Posted by: Caring Friend | June 16, 2006 5:26 PM

Megan wrote: "Autism has fast become the disability most acceptable to the insurance industry, replacing bipolar, ADHD and ADD beginning in the 80s when the field of psychiatry decided to revamp its manual of "billing" codes."

Please tell this to my insurance carrier. Unfortunately, my insurance company does not cover anything with an autism or developmental delay or habilitative service code attached to it.

If my child was 80 and had a stroke and needed to relearn how to talk, she'd have her speech therapy covered. But because she needs to learn, it's not. Her occupational therapy is not covered. Her physical therapy is not covered. Her behavioral therapy is not covered. We even had a annual well-child visit kicked back by insurance because the doctor included an autism code as we discussed developmental issues during the visit as well as everything else you do at a 3 year old's yearly check-up.

We spend more on therapies every month than our mortgage and not a single penny is reimbursed by anyone. Our only breaks are that we have a flex-ben account for the maximum allowed each year (which was kicked back last year and we had to argue for three months to get the services accepted as "truly medical in nature") and we can deduct medical expenses on our income taxes since we spend more than 7.5% of our income on them.

I continue to believe that my daughter has something genetic going on that made her more likely to have autism and then there was something environmental that triggered it. I don't know what that "insult" is or was but it doesn't really matter. She was vaccinated on schedule.

I continue to vaccinate both of my children, however, we have varied the schedule. My kids only get one shot per doctor's visit and we go back just to see the nurse to get the rest of the scheduled shots, one at a time. I also am not giving my children the MMR shot but am getting the separate vaccines instead at the county health clinic since our older daughter had a mild reaction to her 1st MMR vaccination. (She had a titer done to determine that a follow-up measles booster is not needed at this time but we'll be staying on top of this.)

We're a lucky family and I know that - my daughter has high-functioning autism, has gone from non-verbal to extremly conversational and is considered "twice-exceptional" with no cognitive deficits and an extremely high IQ. She was reading on a 3rd grade level at age 4. I don't believe in the word "recovery" and merely see that my daughter had learned to compensate for her very real disability. Thankfully, it's not so severe that it will keep her from being in a full-inclusion setting in school.

Believe me, if I could wave a magic wand and change our world so that autism was not a part of it, I'd be there in a nano-second.

Posted by: amosh | June 17, 2006 10:28 AM

The term "Autism Mom" denotes that we spend ALL our waking and sometimes some of our sleeping time devoted to our children. By devoted I mean, constantly modeling appropriate behavior, asking them to "Ask" for what they want, advocating, explaining why they act like they do, wht our cars are dented or our windshields broken, why our child flaps or runs, and why they scream.
We are not perfect, we loose our patience, lock ourselves in the bath room, or hide in our bedrooms. All the time being called incessantly. That is if we are lucky to have a verbal child. (Mine wasn't until he was nearly five).
We will probably be parenting these children well into adult years as well.
To compare the parenting of an Autistic child to that of a "Soccer Mom" is dealing us an unfair injustice. The parents of persons struck with Autism are underrated, overworked, overstressed and well loved by their children.
I wouldn't trade it for the world.

Another Single Autism Mom

Mom of two on the Spectrum. 10 (PDD) and 12 (ASD)

Posted by: Another Single Autism Mom | June 17, 2006 9:01 PM

Another Single Autism Mom stated that her child was reading at a 3rd grade level at age 4 and is fully conversational. Supposedly my autistic son is only "mildly autistic" and is not cognitively delayed I'm told but I can barely get him to identify a few objects on flashcards. He doesn't recognize letters or their sounds even though I've worked hard on it with him. He'll be 4 in a few weeks. Potty training seems to be an impossible goal. I would feel so wonderful if he could simply repeat the alphabet much less read at any level at all. I don't see a light at the end of the tunnel and I just want to give up.

Posted by: Lois J. Gregory | June 19, 2006 8:26 AM

oops sorry - it was "amosh" not "Another Single Autism Mom" whose 4 yr old was reading at a 3rd grade level.

Posted by: Lois J. Gregory | June 19, 2006 8:31 AM

You know, every infant and toddlers needs and deserves their mommy's full attention. Every mom should avoid putting their young children away in the care of others. It's bad for every baby.

Posted by: laurie | June 19, 2006 8:45 AM

Lois, could you perhaps find a residential program for your child for a few months or a year? Or a day-care program for autistic children? You do seem exhausted and at the end of your rope and I think you are at the point where you need a break. There ARE day-care facilities and you might qualify for financial aid of some sort. If not, perhaps you could look into moving to another area? My friend who has a Rett Syndrome daughter lives in Westchester Co., NY. She and her husband are struggling because it's an expensive area (and they are living in a rented apartment on his salary) but the services available for special needs children there are, so my friend says, among the best in the country. And they are subsidized, which is why my friend doesn't want to move to a cheaper area. There must be someone you can go to for counseling about your situation and help in finding alternatives.

Posted by: Caring Friend | June 19, 2006 10:27 AM

To "Caring Friend:" Thank you very much for your support and your suggestions.

To "laurie:" on a scale of one to five, the helpfulness of your comment rates about negative seventeen.

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Posted by: Jannis | June 20, 2006 9:20 PM

I know only too well the difficulties of having a child with a life long disability. My son was a wonderful, healthy, intelligent and athletic for the first 10 years of his life. Then everything changed with a visit to our ped for what appeared to be a virus. From then on, our lives were turned upside down. My son was diagnosed with Type 1 Diabetes. I knew nothing about this disease or did I know anyone who had it. My son was rushed to intensive care and remained there for 3 days. I slept next to him at night and during the days attended classes and learned how to give insulin shots. I also learned about the strength of a child. As I watched the nurse explain to my son how he would load the insulin in the syringe then inject the orange tears came to my eyes. My son looked at the nurse and handed the orange back to her. He then proceeded to fill the syringe and inject the needle into his arm. I gasped at the sight of this but at the same time was so very proud. After 5 days we were allowed to go home.....all trained and ready to take on this new challenge. Little did we know what it would really mean to our family of five. Each bedtime became a nightmare as my son was afraid to go to sleep because he feared he would not wake up. Each morning he suffered from extremely high blood sugar levels and could barely get out of bed. Slowly with the help of our wonderful endocronolgist, we appeared to gain some control. The years at school meant my having to meet with each teacher to explain that my son needed daily injections, special snack times and perhaps emergency medical attention. This was quite a challenge because at this time, there were not any diabetic children in my sons school and the teachers knew little or nothing about diabetes. Sports posed another challenge. Dealing with the coaches, travel times and away games was extremely difficult. Watching my sons face as he raced down the soccer field I would always know when it was time for him to come out for his shot or a snack. And there were many times when he just collapsed and we would rush to the hospital where he would remain for a few days....then trying to keep up at school. Well, it was now time for college. My son had always been extremely bright but this would mean that he would leave home, live in a dorm and this frightned me more than anything. Thanks to the help and watchful eyes of his roommates, he made it thru with only 2 trips to the hospital. Over the years, all the stress of this disease had taken its toll on the family. My daughter and youngest son were always wonderful to their brother and did not seem to mind all the attention given to him. But for my husband and myself, it was too much and we decided to divorce. It has been determinded by the medical community that my son is a "brittle" diabetic. We learned this after many years of trying to find the fine balance diabetes requires. There is none for my son. He struggles each day with the stress of worrying if he can make it to work which is another whole issue. Very few people understand or have tollerance for someone with a chronic illness. We have experienced this throughout my sons life and now as an adult he sees it every day. He does not have a moment of peace as he has to worry about when to eat, check his blood sugar and give himself the lifesaving shot. The comments from others to the mom who labeled herself "autistic mom" are not surprising to me. Unless you live in the shoes of a mother of a child with a chronic illness you cannot make a fare judgement. You simply have no idea of what we go through each and every minute. I have always tried to be a positive force in my sons life and to this day, he tells everyone that I am his hero. It takes such tremendous stregnth as a mom to provide the love, stregnth and spirit each and every day just to make your child strong, all the while, knowing he is suffering. You cry yourself to sleep at night wanting so badly to make him well but you cannot. You feel as though you failed him. My son is now 30 and has his good and bad days but I look at him with such pride. He is such a wonderful person and I know that he was given this burden for some reason.....I just wish it had been given to me instead.

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Posted by: luis rnvbpl | July 8, 2006 10:07 AM

Just last year I was thinking about getting my grandson/son (I am his legal guardian and have been since he was 2 years old) a flu vaccine, but by chance I checked online to see exactly what was in the vaccine... WHAT do you know THIMEROSAL!! Please don't tell us parents and grandparents of Autistic children it has been taken out when it hasn't been. It is also in Tetus shots. Check with your doctors. I do every time we have to get a shot for him. It is also still in dental fillings. I just had him into the dentist and we asked for non mental fillings.

I watched my oldest son at the age of 2 change over night after his baby shots, that was in 1973 and we didn't know anything about Autism then and I also watched the same thing happen to my grandson!! We thought my oldest son had brain damage due to seizures and severe learning disabilities, social skill difficulties. Now I look back and I can see it so clearly. He is now 34 years old and still have social skill problems and other problems.

Please read Christina Adams book or better yet come and take our place some day when our child is raging out and having a melt down. He has no friends because he doesn't know how to make friends.

We don't ask for sympathy from anyone just a little understanding.

I work for our school district with kids who have many different disabilities.

I would like to live one day in an Autistic body just to see what they see, hear, smell and feel, so maybe I could better understand Autism.

Thank You for reading
Mom and GrandMom in Kansas

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Posted by: xgfuj xkrljun | August 4, 2006 10:47 AM

I've been a therapist for several years. I work at a mental health center in East Tennessee. In Ms. Adams' book "a Real Boy" she mentioned an in-home program called CHAD. However there is nothing on the internet when I look this up. Is there a site where I might learn more?
Nan C.

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