Susan's Blog

Tuesday, February 9, 2010

The Burden of the Spectrum

I am putting up an excerpt from The Autism Mom’s Survival Guide today (Tuesday) rather than Friday. Fridays I tend to want to post about Nat. This piece is from Chapter Two, Surviving the Great Autism Therapy Chase. Remember, the focus of the book is not on the parenting of autistic children, but rather, finding happiness as a parent of an autistic child. Happiness, big and small, given the context of autism in the family. The solutions I have found range from large and philosophical, to focused and pragmatic. No solutions in today’s excerpt, however; you’ll have to wait for the book! 🙂 Pictured here is Nat (with me) last June, going to his prom.

…Families need help determining whether their children actually improved due to whatever therapies they’re using, or if they were simply misdiagnosed as “lower functioning” at the first office visit…

… If these children are all autistic, why do their outcomes vary so much? Why do some children seem to benefit from certain therapies while others do not? It is this confusion that gives autism a particularly soul-consuming quality for parents. Unlike most other medical diagnoses, there’s little precision or clarity—about what the disorder is, what the prognosis is, or about how best to treat it.

Raquel from Arizona was spitting mad when I first talked to her about her child’s autism. The ambiguity of the spectrum left her filled with a sense of frustration and impotence. She felt she was being led nowhere by doctors, autism books, and the autism community at large. “With most other special needs, you know more,” Raquel said, and as the mother of both a child with cerebral palsy and one with autism, she should know. “With my older son, who has CP, we looked into a couple of alternative therapies. But we understood that no matter what, he’s still going to have CP. We weren’t going to be able to cure him.” In the case of autism, however, many parents and professionals feel that one therapy or another can not only improve a child’s functioning but can actually cure them.

Raquel, like many autism parents, believes that autism is a unique childhood disorder in that so many children are diagnosed but so little is known about best practice, treatment, and prognosis. “What we’re calling autism is probably a bunch of different things,” Raquel says. Although not everyone I talked to would agree with Raquel on this assertion, most parents would agree that the spectrum is huge
and varied and that that in itself can be an obstacle to our peace of mind.


I really agree when Raquel says what we are calling "autism" is really a bunch of different things. I see kids that are perhaps "classically autistic" like I consider my D, who was just born that way, and kids who have other issues that manifest in autistic behaviors and may be helped by diets etc. Can't wait for this book!!!And also that pic of you and Nat is one of my favorite all-time pictures EVER!!!!!!!!!

— added by eileen on Tuesday, February 9, 2010 at 8:39 am

I personally feel the spectrum is too big. DSM-V…. I don't think is going to be of any real help either for answers.

IMO the biggest problems is the "we don't know" or the "call so and so" as you walk out of the office after the initial dx. Then parents are left with a "what now". I only got help b/c (a) my family Dr had already started us in Tyke Talk so we had publically funded preschool speech therapy and (b) someone had talked to someone else in passing and passed that tidbit to me and I called… got told wrong county call here… got told we'll be there in 2 days. That was my first Family Support Worker. Even they didn't have nearly all the answers but it was a start. My current FSW will and does tell me… I know the system a lot better than she does.

I wrote – last April – a 27pg epic to the Federal gov't in response to bill C-360 – funding for ABA, – which just an FYI I was against. We need general therapy funding – choice – not gov't mandated programs. The bill didn't pass. A section has the "where to get help". From services to funding. My Ped and the child psychiatrist both asked permission to copy those pages and give them to their patients since I'd written "do not copy" all over the manuscript.

Of course… the only answer I could give was "Yes".

As for an answer on how far a child will improve. I firmly believe that starts at home. Neither of my children would be as far along as they are without the extra schooling, the living of life, the teaching of social and behavioural skills…. if it wasn't for the work done at home. My expectations have always been "we'll see" and truth is we've always treated them "normally" yet still taking into account autism's difficulties…. We've never had a set goal… It works for us.

— added by farmwifetwo on Tuesday, February 9, 2010 at 8:56 am

I agree with Farmwife. My child has learned so much more with home thrapy than he ever has at an ABA center. They just don't have the intensity needed nor do they care in the same way. My advice to parents, get trained and do a lot of the teaching yourself or hire someone VERY good!

— added by Anonymous on Tuesday, February 9, 2010 at 10:33 am

I think your book has a great concept, and hopefully it can give me some inspiration. I'm really struggling to find happiness if I can't hope for a great future for my son. No matter what I do with my own life, my son is still the most important thing in the world to me.

— added by Leila on Tuesday, February 9, 2010 at 1:18 pm

We don't spend hours doing therapy. We spend hours acting like parents and children with the same expectations – relatively – as any other family.

We do homework after school. If nothing comes home I have school work we can do here. We do homework on Sat and holidays for 30min at a time.

We have expectations of personal grooming, self help skills and social/behavioural skills. My autistic child – the non-verbal one (8) – can also get his own clothing and put it on and clean up his toys etc. Truth is, they have better self-help skills than a lot of "normal" children I know that are the same ages – 10 and 8.

We have expectations of behaviour. We went to the church for their monthly lunch a couple of hours ago. Little boy is home with a cold. Little boy had his own lunch from home but he sat quietly, played with his Star Wars toys quietly, said "hello" when spoken to, ate his lunch nicely and even drew the names for the 3 draws. He did flap and giggle… and no it wasn't stopped unless he became loud enough to interrupt those around us.

NT children of 8 don't behave that well.

Will he ever live on his own… doubtful… but that doesn't stop me from parenting.

— added by farmwifetwo on Tuesday, February 9, 2010 at 1:48 pm

For years, I've heard the terms "high" functioning, low functioning, etc. What does it mean? It depends. I think, and this is just me as an individual (which is the point)saying this, is that the levels or "functioning" level are parallel to the rest of the world. How many of us are "higher or lower functioning" than the people around us. Maybe autism mirrors society as a whole. Just a thought. I love your kids:)

— added by Michele on Tuesday, February 9, 2010 at 7:50 pm

Spitting mad? Hurts, but you are spot on. Can't wait to read your book. I need to find that balance.

— added by A Momma Just Trying to Make it Through the Day on Friday, February 12, 2010 at 12:02 am

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