The autism spectrum diagnosis may in fact be a quagmire. Karl Taro Greenfield, author of Boy Alone: A Brother's Memoir discussed caring for his brother who has low functioning autism. He referred to the pervasive developmental disorder label with WTOP.com: "In terms of raising awareness, in terms of raising money... the creation of the spectrum was a brilliant ploy," Greenfeld says, "{But} I don't believe that someone with Asperger's and someone like my brother have any more in common than I have with my brother."
While writing the Eccentricities of Autism, I referenced the gifts rather than the pitfalls that autism provides. This evoked a passionate response from a reader named Lin: "So happy for you that your son is so fortunate. You are truly one of the lucky ones. It is estimated that about 85% of those with Aspergers are not able to maintain gainful employment. About 40% of those with and autism diagnosis are self-injurious, non-verbal and not able to care for any of their own self-help needs such as bathing, dressing, and toilet training. It would be nice if people paid a bit more attention to them to ensure they get the help and services they need."
There is no joy in seeing Lin's point of view. I responded that I recognized her passion." We have no choice but to advocate for our children. Although my son has autism (not aspergers)I am grateful for his progress. However, my crusade for autism awareness goes well beyond my personal journey. I have written often about the questionable "cure" that various celebrities speak about. I have reiterated that preaching "cure" does not help those with non-verbal children who are self-injurious and have severe behaviors."
Greenfield's story is honest and painful. The was no "cure" for his brother, who is severely impaired." My book is about the journey of what happens when the miracle doesn't happen. And it's about how a family can get through that journey, and how a family does get through it."
We are told that in this life, people are given what they can handle. Karl Taro Greenfield has weathered the storm. However, he does raise an impassioned question. Does blending the classification of the spectrum help or hurt our children? Is there a breach in the process? We need to tread delicately with support for all ranges of those who are diagnosed with pervasive developmental disorder. Certainly an IEP (Individual Educational Plan) should be a design for life, not simply for school assessment.
Comments
There real question is if men can learn to complete their families before age 35 and eliminate a major cause of non-familial autism and schizophrenia.
Why does there have to be in the box processes and sometimes unfair opinion diverting our attention away from the facts? Just like anywhere in our societies... main stream thinkers decide where and how the jounrney must proceed and where it will end determining what is or is not normal. I have seen miraculous recovery of my son who is now an honor student going into 6th grade gifted programming next year after just six months outside the traditional public school building where he was being held back, I feel intentionally for funding purposes or just because the administrators could hold him back unfettered, because there is no accountability or expectations for services rendered. The parent is still the best care giver of a child and can bring the child out of the hell they fell into because of all the profiteers out there using our children and families as a commodity replacing the failed industries they once were in charge. Now they want us to buy into their 21st century gold rush.
I recommend you read, "A Child's Journey Out of Autism" by Leeann Whiffen.
I advocate that all individuals with autism meet their full potential. I do not discount that they may indeed recover and actually lose the autism label. It happens, more than we are led to believe.
I also recognize that may not be possible for all of our loved ones with autism, not yet, anyway. At the same time, I am not quick to dismiss the reality that recovery is possible for some and that with further meaningful research most, if not all, individuals with ASD needn’t be autistic or autistic like, for that matter, at all. By dismissing that as a possibility, we sell them short before they've even begun.
Thanks for writing about me, btw.
I get your point! My nine y.o. son has Aspergers. I think he will be able to live on this own by his thirties. My younger son is SPD and will probably go earlier
I do not support breaking this "autism thing" into groups based on severity.Yes, my son is verbal and potty trained. He also has zero social skills, flaps/stims constantly and will talk about nothing but wrestling or YuGiOh. He has sensory issues, can't tie his shoes, button his pants or tolerate denim. He's currently sentenced to 2 years in trailer school with the kids with serious behavioural probs (think sociopathic like fires) He was the victim, but not as slick as the offenders -it is currently with my attorneys at a cost of $10K so far last two months.
Is my son high functioning? yes he is. Is he okay? Not at all. We can't split diagnoses in the hope that we will get further. Symptoms vary in severity for sure. Would the dilution of numbers help? I'd rather be 1 in 150 vs 1 in 1000. Continuum. Diabetics don't flap.
So my husband was 33 when our youngest was born. What does 35 have to do with anything? I know a 25 yr old man and woman that have a child with autism. What's your point? I don't buy into the whole after 35 40 or 50 thing.
Oh, and Leslie - please don't just read one study and spout about it. Daddy was 29 - the age study was probably funded by NIMH. I'd bet money that I don't have on it.
I'd agree that being 60 and having kids might be a risky venture....but please. Check your sources.
Are you stupid or just unintelligent?
We have been curing autism for 9 years. It's time for you to do some reading and learn what literate people have known all this time. You have a lot of reading to do before you will be qualified to write about autism.
Whew! fierce comments for a pretty reasonable post, IMHO.
I personally agree that the "autism spectrum" is a construct that seems to be creating more problems than it solves. I would be in favor of breaking it down into categories -- including a category that describes people with social-communications deficits AND physical illnesses such as GI disorders.
I'm convinced we're really looking at distinct disorders with different causes and symptoms that happen to have one set of symptoms in common.
Lisa
I'm reading Greenfield's book right now. It is extremely well-written. I think it is so important that we not forget this part of the population. I fear we are....
RE Lin.
I do agree that every Autistic child should reach their full potential. Does this involve stripping them of Autism? NEVER!
I appreciate the "other world" (or worlds, technically) in my head. I enjoy being able to use my beautiful senses! If we taught the others to enjoy it, it would be a good thing for them, too! I also enjoy creating my own fantasy worlds, which have a good bit to do with both of my most main special interests. What we should be doing is stripping ASD in general of it's communication disability. No, I don't mean JUST say that our various communication stylings are okay, BUT! We need to get my people interested in communication. SPECIALLY interested.... If people KNEW HOW TO COMMUNICATE WITH, AND TEACH US, Non Spectrum individuals would not think this is a tragedy, and some of those HFA/Aspies out there wouldn't have a reason to be upset over it! I realize that my views are strange, but I believe that they are based in fact.
This is a fascinating discussion. I think we should continue to distinguish between the various groups within the spectrum, if only for the sake of accuracy and therapeutic effectiveness.
YET at the same time, I think we must have a blanket term that captures the whole spectrum - because they are related disorders and sometimes it makes sense to unite under one banner, as with funding, social awareness, etc.
We must keep the various labels for diagnostic/therapeutic purposes, but keep the "spectrum" label for "strength in numbers" purposes.
Either way, I hope we can keep the fighting to a minimum - the more we keep focuses on our similarities (instead of our differences) the better.
I just wrote about this very subject the other day on my blog, Aspie Pride (on blogspot).
I would support honing the diagnosis for one reason- to help our children. Clearly what works for one, does not help another. However, funding is vital for all ranges of the spectrum.(The last thing we want is for people to view high functioning autism or asbergers as less needy, consequently no donations are required)
So what do we do?
An IEP should be exactly what it specifies INDIVIDUAL EDUCATIONAL PLAN.
I have never believed that all behavior problems should be bundled into one classroom. A child who has continued outbursts should not be joined with one who has auditory sensitivity. It is often a catch 22.
Inclusion in the typical classroom has some positive goals. A therapist once advised us to keep our son in public school ("warm bodies are what he needs to learn socialization") He had a point.
Specific diagnosis is essential, along with concrete programming.
One thing about Lin's assertion: "It is estimated that 85% of those with Asperger's are not able to maintain gainful employment..." Is this really true? Who is making this estimation and how are they gathering this information? That sounds awfully high to me. Does anybody have good information on this?
My brother was diagnosed with autism when he was 4 years old. At the age of five he could only repeat words and phrases over and over, but had no understanding of what they meant. He screamed when noises frightened him and would constantly bang his head into the wall. Initially we also found it impossible to establish a strong emotional bond with him, it got to the point where my parent's were considering options other than raising him at home.
Eventually he learned to communicate to a certain extent, and we finally, wonderfully, established a very strong bond with him, it is hard to describe the feleing in words; it was unbelievable. I am pleased to say that he is now about to get his own apartment and a full time job for the first time.
Here's why I posted all this; his psychologist recently changed his diagnoses to "Asperger Syndrome."
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