Autism Is A Journey Not a War (Video)

 

As the mother of a teenager on the more severe end of the autism spectrum, I feel a bit wary about what are being called “autism wars,” the notion that autism is over-diagnosed and the latest “reflection of the culture’s tendency to pathologize natural variations in human behavior” (writes Amy Harmon in the New York Times); that it’s simply “trendy” now to have a child diagnosed, or yourself diagnosed, with an autism spectrum disorder.

My son would have been diagnosed with autism — or, in an earlier era, mental retardation and/or emotional-behavioral disorder — regardless of the latest revisions to the criteria for autism in the Diagnostic and Statistical Manual of Mental Disorders (DSM). Charlie can only talk a little (though far more than when he was diagnosed at the age of 2 in 1999). He has extreme “behavioral episodes” that are not seizures but from some sort of unusual neurological activity and that manifest themselves in ways like thrashing, biting, banging, grabbing — not because there is any intent of hurting anyone but because, again, of something in his neurological functioning.

When I mention some of these episodes, some parents with children with an ASD diagnosis register alarm, suggesting that their child does not do such. There is much variety among individuals diagnosed with an ASD and it is a truism that “if you’ve met one child with an ASD diagnosis, you’ve met one child.” But all children, all of our children, struggle in other ways and deeply.

My husband Jim Fisher and I, while recognizing that Charlie’s cognitive challenges are significant — there is a pang to know a friend’s child who had a PDD-NOS diagnosis when younger is entering a competitive high school while Charlie attends a county autism center — but it is better that more children at all ends of the autism spectrum are receiving a diagnosis. They are children whose struggles would have been written off as due to “lack of character” or “moral failing,” as Jim’s hyperactivity in classes taught by nuns in full habits was considered in the 1960s. Today, Jim would have quickly been given the diagnosis he came to realize he has — ADHD — and provided not only with an Individualized Education Plan (IEP), but sessions in the resource room to help his failing grades in math (in contrast to his very high scores in English and history), extra time on tests and much more. There would be accommodations and understanding, not derision and the message that “something is really wrong with you and you will suffer and it’s your fault.”

In raising Charlie, Jim and I prefer to focus on the day-to-day realities of Charlie’s life; of providing him with the best possible schools and services and programs that teach him to use his abilities (he has many, though it takes specialized teaching and understanding to note these). A young man, Alex Masket, who has some similar struggles as Charlie, is an artist who makes beautiful art out of colored duct tape, legos and other materials. (He did this installation in his New Jersey bedroom.) I was fortunate to meet Alex’s mother a few years ago, shortly before he was turning 21 and therefore on the verge of “aging out” of educational services. She did not mention Alex’s art and I was thrilled to realize that he is her son on watching this documentary, Breaking Boundaries: The Art of Alex Masket:

Charlie has created a picture or two with similar attention to color and symmetry as Alex. So far, Charlie shows limited inclination to do more than the occasional picture or two in art class at his school; his preference is to be outside riding his bike for several miles with Jim. I like to think that, like Alex, Charlie (with a ton of support and love from his parents, especially Jim; together they have ridden thousands of miles over the years, enough to go to Mongolia — I’m not kidding) is finding his passion and his talent, and that somehow this will lead to something good for his future life. Charlie will not be going to college nor will he be able to drive, take care of his own finances, live by himself. Someone must always be at his side when he rides bikes.

We feel privileged that we have been able to accompany Charlie on these rides, so far: Autism should not be about “wars” and catfights over who should be diagnosed or not. Autism is rather a journey that many of us have found ourselves on. We are fortunate to be able to have our boy as our companion and our guide.

 

Related Care2 Coverage

Autism: What Is “Medically Necessary” Treatment?

Gene Mutations and Autism Risk: A Link?

4 Books By Parents of Kids on the Autism Spectrum (Slideshow)

 

Image from the trailer for Breaking Boundaries: The Art of Alex Masket via YouTube

21 comments

Duane B.
.3 years ago

Thank you for sharing.

Fiona T.
Fi T3 years ago

Let's get along, not expel

Kenneth L.
Kenneth L4 years ago

Rodger speaks the most truth, the 'bible of psychiatry', the DSM, is full of 374 'mental disorders', which have not a single, a single, proof of existence by medical science whatsoever---including brain scans or imagery, 'chemical imbalance' or any other neurologic activity. Just speculation, hypothesis, theory. Unfortunately lay people (the person on the street) believes these labels and thus calls them mental disorder, mental illnesses, diseases. Which they are't. They are simply behaviors put into categories and given a name. They are put into the DSM by majority VOTE, no scientific or medical proof to back up a single one.
The word 'autism' was created by psychiatry. So was 'autism spectrum disorder' and 'asperger's syndrome'.
90% of psychiatrists give out psychotropic drugs to their 'patients' 90% of the time.

Kathy Perez
Kathy Johnson4 years ago

no one KNOWS what causes autism. but this video and article were nice. thank you

Heather H.
Heather H.4 years ago

As a child psychologist, I certainly understand the concerns with overdiagnosis. However, one of the things that so often times gets overlooked in these discussion is that in order for a child to receive treatment by their insurance or within the schools, they must have a diagnosis. Otherwise, the parents are the ones who end up paying out of pocket. Although the system is faulty, the intentions of the system are good. Check out my recent thoughts here in answering the question: Do we over diagnose children?

http://www.themommypsychologist.com/2012/04/11/are-we-over-diagnosing-our-children/

Rana Newbury
Rana Newbury4 years ago

I'm not sure I get this "art" it just looked like a huge wad of tape to me. This may well be why I am into science and not art though.

Jonathan Netherton

@Colum N.: BS meter - 7/10
Mercury and other neurotoxic chemicals exacerbate developmental disabilities, and the evidence that vaccines cause autism are anecdotal at best. What causes developmental disabilities are improper health in the mother, genetic abnormalities in the father's sex chromosomes and genetic predisposition. All three of which are deteriorating in modern times.

Just like you can't cure "fingernails", you can't cure autism. It is a way of rewiring the interactive boundaries between major processing zones in the brain, not some disease caused by poor diet. This is the same kind of faith that believes that there's no such thing as a supplement overdose and that water has memory.

Samantha Shira
Samantha Shira4 years ago

thanks for sharing.

Rene L.
Rene L4 years ago

A beautiful story about healing autism with food
http://www.doctor-natasha.com/fussy-eaters.php

Colum N.
Colum N4 years ago

Oh yeah and by the way..

If anybody wants to know the cure for autism..

one cup of magnesium chloride flakes and a cup of baking soda in a hot bath every second day until the symptoms pass.

You also need to support the immune system with natural herbs like echinacea and stinging nettle tea.

AND STOP MEDICATING>> Drugs are poison!