My Two Cents (About My 2 or 3 Autistic Children)

Reflections on upcoming changes to autism diagnoses

Posted Jan 21, 2012

Guest blogger Alice Oakes is a wife and mother of 3. She writes a blog titled Beyond Convention about the challenges and joys of raising 3 autistic children.

There is a lot of recent press about autism diagnostics. There is a recent movement to tighten criteria - thereby lessening the number of people placed on the autism spectrum. 

This is all based on the belief that the "autism epidemic" is caused by early, mild diagnosis — and thereby not a true epidemic. 

I completely agree with that thinking. Children are being diagnosed earlier. Children are being diagnosed milder. This has caused recent statistics to show about 1 in 100 children being placed on the spectrum. I do not think there are more autistic people now than there were a generation ago - simply more diagnosed people. 

I am a mother of 3 autistic children. Vera (age 8), Emery (age 6) and William (age 3). 

We have been heavily involved in early intervention for 6 years (since Vera was diagnosed at age 2). We have participated in public, private and research funded intervention methods. 

My 3 kids span the spectrum - 

William is mostly non-verbal, extremely ritualistic and classically autistic. 
Emery is more social than most children his age, academically gifted and a bit rigid in his thinking. 
Vera lies somewhere between her brothers on the spectrum. 

Making the spectrum more narrow might exclude children like Emery. I have absolutely no doubt that Em is autistic, but his need for assistance is minimal. 

The new guide-lines would still provide Emery with a diagnosis, but it would not place him in the same group as classically autistic children (such as Vera and William) 

Most parents of autistic children are opposed to the new guide-lines. For many parents, with mildly autistic children, it will mean losing services and financial support. 

I am in full support of tightening regulations on classic autism diagnostics. 

This may sound like I am throwing my middle child under a figurative bus, but hear me out...

Autism is a part of all 3 of my kids. 
Autism is a huge part of Vera and William. Over the past 6 years, I have noticed it being harder and harder for them to be autistic people. 

When Vera was diagnosed (6 years ago) we had overwhelming support. We had medical professionals bending over backwards to provide her with treatment and a community that was empathetic to her challenges and supportive of her differences. 

Now, with a mostly nonverbal 3 year old, I do not find that same acceptance. 

The overwhelming number of mildly autistic children has drastically changed society's views on autism. 

It is no longer a word that many people take seriously. It is much like the over diagnosis of ADD/ADHD in my childhood. It has taken children like V and Will (in modern times considered severely autistic) and grouped them with children who do not fit the criteria for classic autism in the least. 

This has caused a lot of issues for my two "severely autistic" children.

The public schools are so overwhelmed with diagnosed children that they cannot provide enough support. Federal and state relief programs (such as respite care) do not have enough money to hire workers (Vera has been on the waiting list for respite care for over 5 years). 

Perhaps most traumatic is the passive way others view autism. It is now viewed as a mild learning delay - rather than a life long physiological difference. Community acceptance and support have become nonexistent. 

Taking my classically autistic 3 year old out in public is very difficult these days. Simply stating that he is autistic (when his behavior is loud or unusual) is no longer enough to find compassion or support - it is too often met with annoyance or disbelief. 

I have no doubt that Emery is autistic. Once the autism gene(s) is isolated I am sure he will test positive. But he does not need services and support like my other two children (and so many other more severe kids). 

So while I empathize, as a mother of a mildly autistic child, with the losses he will face if diagnosis is tightened. I also see, on a daily basis, how the "epidemic" has hurt autism's most vulnerable population. These kids are the ones who need services and acceptance the most - yet the "epidemic" has made getting these services and acceptance next to impossible. 

This is why I, as a mother of 3 autistic children - who span the spectrum, fully support the new, more rigid, diagnosis guide-lines.

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For more information on the upcoming DSM-V changes in the autism diagnsotic criteria, see:  nytimes.com

 

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