Are we Abandoning Families with Autism?

On June 19, 2002 I attended the congressional hearing, “The Status of Research into Vaccine Safety and Autism” in Washington DC. This hearing was part of the oversight investigation of the Committee on Government Reform, headed at the time by Congressman Dan Burton (IN-REP).

According to the background material presented to the Committee by Congressman Burton, “When the Committee began its oversight investigation in 1999, autism was thought to affect 1 in 500 children.” In 2002, when the hearing was held, autism was thought to affect 1 in 250 children. CDC data from 2010 indicates that 1 in 110 children have an autism spectrum disorder (ASD).

As I was leaving the hearing, I saw a woman standing outside holding a sign detailing the $30,000 a year it cost to care for her autistic child.  According to a 2007 study by Michael L. Gantz, MS, PhD, “The Lifetime Distribution of the Incremental Societal Costs of Autism,” autism costs our society “upwards of $35 billion in direct (both medical and nonmedical) and indirect costs to care for all individuals diagnosed each year over their lifetimes.”

For families this translates into direct medical costs estimated at $29,000 a year; direct non-medical costs of between $38,000 and $43,000 a year; and indirect costs, such as lost wages for parents, of $39,000 to $130,000 a year. Read one family’s story, “The High Cost of Autism” by Theresa Wrangham.

With these sobering numbers in mind, shock waves are reverberating through the autism community because of recent news of proposed changes in the definition of autism. The American Psychiatric Association is in the process of editing the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM) and their expert panel is currently reassessing the definition of autism. It is expected that the panel will tighten this definition and thus reduce the rate of diagnosis.

Proponents for the change contend that the vagueness of the current DSM definition of autism may have contributed to the increase in the diagnosis of autism. Opponents fear that families will be left out in the cold. Changing the definition of autism could effectively end the autism epidemic, according to Fred. R. Volkmar, PhD, director of the Child Study Center at Yale School of Medicine and author of a new analysis of the negative effects of the proposed changes. Quoted in the New York Times of January 20, 2012, Volkmar said, “We would nip it in the bud–think of it that way.”

Writing in The Health Care Blog, Anne Dachel says, “…these children aren’t going away regardless of what we call them…there will be lots of very angry parents who rightly feel that their children mean nothing to the medical establishment whose only aim is to make them disappear.”

Lisa Sykes, founder of CoMeD and mother of a son with autism says, “Deciding to count only some but not all of the children on the autism spectrum is no different than deciding to count some but not all of the children who get hit by a car.  It doesn’t mean they aren’t injured; it just means that we as a society are turning away from the victims and their very real needs.  This manipulation of the autism rates should unite advocates for children and for the disabled to challenge this change in the DSM-V.”

The New York Metro Chapter of the National Autism Association urges families, caregivers, and professionals affected by autism to contact the American Psychiatric Association and other organizations:

American Psychiatric Association

1000 Wilson Boulevard, Suite 1825

Arlington, Va. 22209-3901

1-888-357-7924 and

Comment on their Facebook page.



Peggy O’Mara  (101 Posts)

Peggy O’Mara founded in 1995 and is currently its editor-in chief. She was the editor and publisher of Mothering Magazine from 1980 to 2011. The author of Having a Baby Naturally; Natural Family Living; The Way Back Home; and A Quiet Place, Peggy has lectured and conducted workshops at Omega Institute, Esalen, La Leche League International, and Bioneers. She is the mother of four.

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13 thoughts on “Are we Abandoning Families with Autism?”

  1. My son (who is currently diagnosed with Aspergers) will still be included according to the proposed change. However, I know many who would lose the autism spectrum diagnosis. I’m afraid what that could mean when it comes to health insurance.

  2. As I read it, it appears that more children, not less, will meet criteria for the diagnosis. I am in the mental health field and I have seen many turned away because the current criteria is too strict.

  3. So true. My stepson, who we thought had autism until he was around 9, when it was ruled out, and was recently found to actually have Tourette’s. We’ve spent untold amounts of money over the years to help manage his symptoms (which, since we went the natural and homeopathic route, was actually similar for both conditions, so we don’t feel we lost money for nothing) plus we’ve also spent tons of money on legal fees in my husband’s attempts to gain primary custody of his son from his ex-wife because she does absolutely nothing to help him and in fact, her actions (or in some cases, the lack thereof) are harmful. So expenses for families of children with these chronic conditions can go beyond medical ones especially for families who have many mouths to feed (like our blended family total of 7 children) yet don’t qualify for low cost insurance even in a single working parent household due to “we make too much money”. I feel for all those parents out there. I try to take on much of the responsibility for my stepson, even in regards to attending school meetings/teacher conferences so that my husband does not have to miss work. Its all for the betterment of a child and so far, its working quite a bit.

  4. Lest I come across as uncaring and lacking compassion, let it be known that I am not such. We do need to exercise compassion, but we must think with more than just our emotions.

    I feel that too often, we do not see children as we claim to see them in our “care and compassion” for them. I think that most if not ALL (including Peggy) would agree with this statement: “All children. . . deserve to be challenged to the extent of their abilities; this includes children who have been left behind and children who want to surge ahead.”

    For the information of your readers: children on ALL ends of the spectrum of capability (and I’m not just talking about Autism) are already being left out in the cold. There is not taxpayer support for these other families with unique children with issues. Autism is not the only issue or obstacle that is being faced by many children’s families across our country.

    For those complaining they do not get benefits at all, imagine being a parent of a child with particular needs that are totally overlooked by society and our government for any funding or benefit? It’s insult upon injury to continue asking taxpayers who receive absolutely no benefits to help their own children (when they are already squeezed by the economy, rising gas and food costs, paying for their own children’s needs to be met). The money that would be used to pay for, say, speech therapies or even for a highly academically gifted child to have the opportunity to reach higher, may not be available now for that child because other individual’s believe their child’s issues are more important.

    I know this sounds harsh, but if we’re going to look at only Autism as needing funding from taxpayers, is it not also fair to consider children all over the board who may need special funding. At least a decade ago, my own home state decided to lump the academically gifted programs into the “Exceptional Children’s Programs”. . . do you know what this meant? This meant that all funding for the academically gifted now belonged to the management of programs that already deemed themselves more worthy of the funds than the “gifted, heh” program. It decreased the funding available to the academically (or even artistically) gifted programs across the state. It’s easy to dismiss these particular students, but when we do, we fail to recognize the effects it has on our society and culture at large. (Public schools, anyone?)

    I think we can all agree that there’s something inhumane in denying the potential of ANY child, not just the Autistic child. There are OTHER issues out there affecting families that are having adverse effects on children, families and society. Autism is not the only one.

    So before we get too hung up on this, are we truly being fair? Are we looking at the big picture? Are we the only victims?

    Again, I do not mean to come across as lacking in compassion, but I have personally forked out a lot of money to take care of my own children’s needs because the government would not ask the taxpayers to help me out with my children’s issues.

    I was sitting in a waiting room with one of my children getting ready for his first speech therapy appointment when another mom came in with her children for their regular appointment. We started a conversation, and it began clear that this mother was perhaps doing the best she could, but she had made some life decisions that were not so hot for the welfare of her family. The taxpayers had consistently aided her children with issues that may have been prevented had the mother made better decisions. . . The mother was pretty much being paid by the taxpayer to have babies. (This is not the first time I’ve heard of this type of situation.) I cannot lie that I was a little bothered at the end of my child’s appointment when I was told that my health insurance may not even cover his therapy because “Twin to Twin Transfusion Syndrome” (which he suffered in utero) sounded like a made up disease. I certainly would receive any government aid. I wasn’t bothered so much that I had to pay for this out of pocket for my child; I was more bothered that I, taxpayer, was footing the bill for families who would always feel entitled to my pocketbook with no concern for my children’s obstacles. One doesn’t have to be rich to be excluded from receiving government aid in such situations.

    Furthermore, I could relate to you the story of one of my other children with “needs” that aren’t deemed “needs” by most of society. The public school system would not reach out to my academically gifted child, and they were not legally bound to do so. So my husband and I have made a time and monetary investment in homeschooling him so that his needs and his potential could be met. I don’t think many of your readers will give a fig about that probably.

    But again, I ask: Don’t all children deserve to be challenged to the extent of their abilities?

    Or are we hypocrites?

    Peggy, if you are going to cover this issue, I hope you will consider the injustices where children and their families with other obstacles/issues are not being funded by the taxpayers. We need to draw attention to all of these things affecting children, or else, we are just taking sides and have only compassion for particular children.

    If someone could please outline to me why it’s more important to focus more funding on Autism support than any other group needing support, I’d love to hear about it. I see the numbers Peggy has given here, but look at some of the other needs children face with all their numbers.

    I have no doubt that particular programs, including ones for Autism, already receive way more than other programs do to support children with other needs.

  5. It may be unclear, but I received NO taxpayer money or other aid in paying for my child’s speech therapy despite his having suffered Twin to Twin Transfusion Syndrome in utero.

  6. Emily,

    Yes, All children deserve to be challenged to the extent of their abilities, but that’s only part of the issue here. I think you’ve been misinformed about taxpayer dollars that families with autism get. Many of us get zero. Insurance, in fact, is permitted to deny coverage based on an autism diagnosis in many states. An autism diagnosis can actually hurt you when it comes to getting services and many families go broke paying for services that neither the state nor insurance cover. The woman that you spoke to in the waiting room was not typical.

    Research money for autism is in fact far, far less than most other conditions. Autism often isn’t recognized as a ‘health condition’ but a “learning disability” which is why the schools often take the brunt of it. – with varying levels of willingness. So your assertion that autism programs get greater support than others is not necessarily true.

    The real problem here is that the number of children needing services has risen so drastically in the past 20 years that services have to be watered down for everyone. I believe changing diagnoses is another way to further reduce those services and/or to continue the long winded debate of whether there really is an increase or have all the doctors suddenly started over diagnosing. The increase is real. Not just for autism but for many childhood conditions. We need to band together as parents and make sure all children needs are served, not pit one diagnosis against another.

  7. I understand the despair that some parents of autistic children are feeling about this. But the real problem is how many children we have in our society today who have some sort of autism. Doctors are very quick to diagnose autism in children. The son of a friend of mine was diagnosed and started intensive therapy for more than 20 hours a week. He progressed so quickly that the Doctor was forced to change his diagnosis. He was simply behind developmentally. He only needed someone to actually spend time with him and let him explore the way that babies and toddlers need to. There is something more we as parents can do while our babies are still in the womb and ever after birth to prevent autism. Come on, 1 in 110 is absolutely unacceptable!

  8. My son has a severe language disorder (mixed receptive expressive language disorder) that is often misdiagnosed as Autism, especially when it’s comorbid with other conditions such as sensory processing issues, ADHD, and global developmental delays which mimic many of the secondary signs of Autism. Through learning about my son’s conditions I’ve met countless other parents whose kids have the same language disorder and issues but are denied services from their school, health insurance, and community because it’s not “Autism”. As a result many parents will actually accept or push for the label even though they know it’s not accurate just to GET the services. Even though these kids are not Autistic they do need help and need services to better their chances at success and the struggles of these children (and their parents) are far from irrelevant, though society tends to tell us that. The frustrating bit is that many of these kids with the language disorder who are misdiagnosed as being autistic are then part of the “miracle cure” or “grew out of it” statistic. They grew out of it because they were never autistic in the first place! The whole thing is tragic and I’m hoping that with the new criteria that kids are more properly diagnosed for what they truly have and are weighted more equally so that each child gets the services they need.

  9. No, we are not abandoning them, we are classifying them correctly. If anything this means that insurance companies will be providing benefits for the correct treatments and the correct treatments will be given. The DSM is a diagnostic tool, narrowing the definition of autism makes that tool better. At the same time, other definitions have been widened and now include the behaviors that were once called autism. As a result, treatment will be better defined and better in scope.

    Honestly, the whole discussion about abandoning families with autism is good press and overhyped.

  10. While these proposed changes would not directly affect my family as my children never did recieve the diagnosis I do feel the pain and relive the nightmare we have endured as I watch the system repeatedly fail the chldren…intentionally. This is not the first time this issue has arisen and it is certainly not going away. When we watched our twins react to vaccines at the exact same time and just hours after the injections I could not help but question the shots. That was in 1998 and 1999. When they did it again in 2000 I once again questioned the vaccines and time and again I heard “the benefits outweigh the risks” and that the fevers were “coincidence” and the subsequent loss of speech was “unrelated”. A review of our medical histories shows that we all reacted and we did so after each and every round. As for me I suffered a stroke within minutes of a tetanus booster. We are a medical family who became involved hoping to shed some light on the greatest medical tragedy in history only to be told to keep quiet.

    My children live in limbo. They deal with daily life as if nothing happened. With the exception of the assistance one twin receives in school due to another medical condition they are expected to perform like everyone else. They look around and see many others in the same situation. This problem will continue to grow as long as those in power are allowed to plow over us all.

  11. Emily,

    I understand where you are coming from. I truly do. As a “gifted” child myself I know how woefully inadequate public school funding for the gifted is. Though I have not had to go through the process of educating such a special child, I will be, soon, with my daughter. As for the other end of the spectrum, I do have experience there. My eldest has multiple comorbid disorders which, without his HFA DX, would have relegated him to the bad kids class eternally.

    You need to understand that though those who are blessed with more brains and more abilities “should”, in an ideal world, be challenged and groomed for success, it is simply not realistic in the society we exist in.

    For one, intelligence is extremely undervalued. It is a thing to be scorned and derided (by most) and simply not understood by the remainder. From their viewpoint, such children have an advantage over the others. The playing field must be leveled not made fair or true.

    To them, it is the equivalent of bemoaning the adversity of wealth and whining “Why oh why can’t I get the same help dealing with the complexities of corporate tax structure or how to find the best maid as those others get with say their FAFSA loans and low income housing grants?”

    Because those who have been given more are expected to suck it up and deal with it themselves.

    In fact, those who are only marginally normal are also expected to suck it up and deal with it.

    Do you see any special programs or helps for the child with a 102 IQ, poor attention span and underprivileged life? No, well I just described a good chunk of kids. But they too, are expected to suck it up and deal with it.

    It’s not fair. Not even remotely so.

    People who are given significant disadvantages though are expected to be helped in society. It is the other end of the level playing field. They, by virtue of their disadvantages either cannot help themselves, cannot suck it up or cannot do either without ASSISTANCE. So, we provide it for them.

    Now, thankfully, there are gifted programs for children (however bad they may be) so society has acknowledged the advantages of helping such children to some small degree. But, they cannot expect to be placed in the same category of need as those with disadvantages because they are not in the same category of need. Not by a long shot. It simply isn’t a fair comparison.

    So, yes, I do understand why you are frustrated by I simply don’t think you are looking at things from the right perspective.

  12. For families who have the type of insurance that pays for autism benefits, this could have a negative impact. However, for many, many families that I have worked with (as a speech pathologist) for 20 years, this could be a blessing. Calling a set of behaviors “autism” does not make it autism, and it does not guarantee that a child will get what s/he needs. The DSM is on its 5th major publishing (in addition to other reviews) for a reason; they must refine what they call things as we get new information about what conditions actually are.

    This is not an attempt to exclude a group of needy people from the service they require and deserve as people because it would be easier to pretend they don’t exist; it IS an attempt to truly understand what people have. Autism is very real and very disabling. Unfortunately, I see far too many children enter the testing world so their parents can genuinely find out what is going on, and a first inkling of doctors, specialists, or evaluators is often something on the autism spectrum. It is at the forefront of so many conversations that who could help it? But what about those times it is NOT autism, and we stop our search because we think we have found the answer?

    Autism therapies can work for autism, but they are not the only or best therapies for other conditions. By defining autism correctly, we may actually spare families and children years of expense and interventions that aren’t even truly getting at the heart of their true disabilities. With all sincere respect and admiration for those families coping with disabling conditions, I would like to ask us all to try to see this as something more than a conspiracy or an attack. It may be a move in the right direction.

  13. I think Emily touched on a very important thing that plays into why many people are frustrated with the narrowing classification of autism. Currently insurance companies are not allowed to exclude benefits for a child diagnosed with autism. When the new diagnosis classifications take affect, there will be a number of children who will fall into the holes of insurance exculsions (whether public or private funding). These children still need help, even though they are not autistic.

    My daughter has sensory processing disorder. When she was first diagnosed, we were denied coverage from our insurance because “sensory” was excluded from our plan. I now have to pay for her therapy sessions. Her condition is mild, but she definitely needed help. I can guarantee that she would not have been able to participate in a “normal” classroom without therapy. Despite being provided speech therapy through the school district, they denied my daughter help for her SPD. They said she was not serious enough to take into their system!

    I think the issue should not be a concern for the diagnosis being more narrow. The medical community is constantly reevaluating definitions as more research sheds light on the human body and its various conditions. The real problem comes from the insurance industry, both public and private. Why should some people be denied coverage while others receive help at little to no charge? Whatever the diagnosis, these children need help. A change in definitions should not mean that they can suddenly function well without help.

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