Tuesday, October 06, 2009

List of Excuses for Recent Autism Rate Increase - Add Your Own

The incidence of autism spectrum disorder in eight-year-olds in the U.S. has risen by 50% since 2007, from one in 150 to one in 100, according to a CDC report that will be released later this year. However, the higher rate might not mean that more U.S. children have autism spectrum disorder, but instead that physicians' ability to detect the disorder is improving, according to Tom Insel, director of the National Institute of Mental Health.

It was completely predictable.

As soon as word began to circulate that studies announcing an increase in autism diagnoses from 1 in 150 to 1 in 100 or is it 1 in 91 you had to know that the usual excuses would be trotted out so that health authorities could continue to deny that there actually is an autism epidemic.

1. The 1994 DSM definition changes are STILL being used to explain a 50% increase in autism rates between 2007 and 2009.

2. Increased social awareness.

3. Alleged availability of autism services. Autism diagnoses provided so that patient can obtain autism services.

4. Greater ability to detect autism. Thank you Dr. Tom Insel.

If anyone has any other excuses being used to deny that autism is really increasing despite a 50% increase in two years feel free to offer them for this list. Maybe it is time to stop conducting such surveys if the people who actually provide the surveys and studies do not take them seriously.

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One Sick Mother said...

Aliens from outer space are interfering with babies in utero.

But it's not environmental Noooooo. It's the aliens' fault.



Astrid said...

I still haven't been able to locate the original study, but if the news reports are right, this research was actually carried out in 2007 and published now, so it wasn't really about a 50% increase between 2007 and 2009.

Barry Hudson said...

Hi Harold,

My favorite excuse - more late adult self diagnosis.

My real hope (no kidding) is that the increase is a valid reality since if we are just "recognizing" ASD now God help us all for the horrors we have commited in the past.

Life With PDD-NOS said...

The recent rise in autism diagnoses aren't really indicative of an ACTUAL increase, because we don't actually carry out any studies with the money we are granted for these studies.

We just sit around, smoke, and play video games in the labs. Sorry, folks. Carry on, nothing to see here. Don't mind the thimersol.

Astrid said...

@ Barry: even if the neurology of autism is not actually increasing, it doesn't mean that we did lots of horrors to every autistic person of the past. Some, quite likely, because some autistics did get incorrect diagnoses (schizophrenia, personality disorders, etc.) and thereby incorrect treatments. However, some people with the autistic neurology in fact functioned much better several decades ago, because social/communicative skills were less important, life was less hectic (people working at the same job from age 15 to age 65, etc.), etc. In a certain way, these people could account for an actual increase in manifestations of autism, because autism is defined by behavior. But this fact that more people actually exhibit behavior diangosable as autistic, doesn't mean that their neurology is suddenly changing.

Sandy Crux said...

Astrid and others --

We have gone from one extreme to the other -- when few children were diagnosed as autistic to supposedly 1 in 100. Which I don't believe is reality -- which I talk about in my blog post today.

But, on a personal level, let me assure you all that autistics did NOT function better decades ago.

In fact, it was actually quite the opposite.

In fact, when my son was born in 1965, the only diagnoses were "perceptually handicapped," "behaviourally handicapped" or "mentally ill."

A diagnosis of "Autism" was reserved for children who were completely non-verbal and isolated.

Remember, there was no spectrum then. And, the very idea that life was somehow easier is really unfair for those of us who struggled without support and without the basic services you can take for granted today.

Is access to diagnosis and treatment perfect today? No. But, there is some possibility. Some parents put their child on a waiting list for treatment. Others borrow money to pay for the treatment. At least there is now that possibility.

We were not so lucky, particularly mothers -- who were blamed for everything and referred to as refrigerator mothers. Meaning, we not only had to deal with finding help for our children but the guilt that somehow we were to blame.

Look up a book I took in intro psych in university in 1969. It was called Dibs in search of self (http://www.amazon.com/Dibs-Search-Self-Virginia-Axline/dp/0345339258). If a child wasn't like Dibs, he was not diagnosed as autistic.

Moreover, there wasn't one penny for any treatment like ABA. We had to struggle the best we could.

In school, segregated special education was the best we could hope for as well.

I don't mean to offend anyone, but while parents today are struggling to get access to correct diagnosis and treatment,things are SO much better than earlier times.

My son is now 44. He thankfully did get some help -- when he was 14 in a special residential program that offered behavioural modification. He was away from us for nearly 3 years, home on weekends when he earned enough points. Which wasn't often. I still deal with guilt about that. How many parents today have to "give their children away" to get them help?

In any event, he turned out to be a fine young man, married to a woman with developmental and physical disabilities. He is very proud of being married and taking care of his wife.

But, he has never been able to hold down a competitive job. The lack of structure, social skills, etc. make that impossible. He is considered moderately autistic today (more severe than Aspergers but no longer needing treatment). Although, daily, he still has to have someone help him deal with his obsessive behaviours. But, he does volunteer at a seniors home and they love him because he will sit down and listen to their stories.

The good news this week is that we have just heard that he and his wife have been accepted into a supervised independent living program -- meaning we will no longer have to worry about him after we are gone.

The bottom line is that the current diagnosis rate is going to have other repercussions that the powers that be are not thinking about -- and that is for the high functioning children on the spectrum, a lifelong "label" that later in life will be impossible to get rid of. As a former academic, and educ. psychologist in private practice, I have seen it happen.

No, having learning disabilities or being hyperactive is much easier to accommodate than being autistic.

So, IMO we should leave the definition and the spectrum tighter (1 in 500 perhaps) so that those children who need ABA and similar therapy get it -- because there is no way society will be able to afford help for 1 in 100.

Sorry for being long winded but when I read that it was easier in the past, I literally get tears in my eyes!

Roger Kulp said...

Part of the problem is this whole business of lumping everything under the big umbrella of ASD.Now that I am a little further along with my recovery,thank you MB12,and thank you CoQ10 for improving my ability to use words,I can see just how complex the situation is.

I would really like to know just how many of these 1 in 100,1 in 51,or whatever the number is this week,have Asperger's.

A lot of us argue that those with Asperger's have no business being classified as autism,or being classified with the more severely disabled.But if you say this, perhaps you ought not to buy into the numbers,because a lot of these people may just have Asperger's or mild PDD.

They may be inflating the numbers.

Has anybody made an attempt, retroactively,to factor in all of these obnoxious people who have been diagnosed with Asperger's as adults,into the numbers from 30,40,50 years ago ?

There were people who were diagnosed as retarded,or like me were piled on with multiple diagnoses such as developmentally delayed,learning disabled,apraxic, schizophrenic,"behavior disorder affected" and a few others I could name,who should have been diagnosed with autism as children,but could not,simply because we could talk.
Thank you Sandy for bringing back some very ugly memories.My mother and I have been exactly were you and your son were.I am about his age.

And if we did go back,as I did, after the 1994 changes,for a proper diagnosis,it was not with some lame-ass Asperger's,that we could write a bestselling book,or big movie about,but with a far more severe form of autism.

I may have been diagnosed with autism as an adult,but the developmental psychologist said in the next breath,after he told me of my diagnosis,that I needed to be in an institution,because I was a threat to my own safety.

That's something you never read in these adult Asperger memoirs

Personally I would be very happy, if the APA did the wishes of their neurodiversity buddies,and said that those who had serious inborn medical problems,that cause or contribute to our autism were no longer classified as having autism, but had some form of non-autistic encephalopathy with"features of autism".

Astrid,a lot of us can function a lot better now than we could in the past.Computers and the internet are the best thing to happen to an autistic with limited ability to use spoken language.

Now that I am really starting to recover,and I can see just how really sick and disabled I was. There is a lot anger and frustration coming to the surface, and the Ari Ne'emans and Kathleen Seidels are the perfect target for it all.At the risk of sounding like John Best,I can see why neurodiversity wants to put down biomed as fraud and snake oil.After while,and the stuff really starts to work,you can see both neurodiversity, and the notion that Asperger's is the same as autism for the lies they truly are.

Barry Hudson said...


What you say is what I meant by horrors of the past (such things are a horror to me). I have done the research of our societies history with autism and the "refrigerator mom" is a particular horror to me. I can not comprehend how you could have dealt with this, let alone how any competent professional could remotely subscribe to such a concept. I know it was VERY much harder in the past and this to me is also a horror. Until our son (now five years old,ASD) I did not have clue one about the reality of how we have (and continue to) so poorly treat all people of disability in Canada. Very true it is better now (still much to be done) and for the reality you and your generation faced, and survived, you all deserve a gold medal and to me represent true heroes in our society.

Anonymous said...

my favorite (NOT) is that kids are just brats these days and parents don't discipline them, therefore parents just give the excuse that their kid must have autism, plus the parents just want this expensive therapy for their kids and fancy preschools, so they just say their kid has autism. There are so many errors in every bit of that thinking, but I have gotten to the poin that if people are dumb enough to belive that, then they deserve to believe it. And the end of the matter is my son with autism is getting what he needs, and will reach his best potential. So my gain, their loss.

Sandy Crux said...

Thanks for your responses. It is really nice to share like this. Doesn't change the past, but removes some of the burden of guilt.