Aspies For Freedom

Not All Autism Is Equal

I had the chance over the last few days to click around the internet and check  more autism sites than I usually do. I have read all kinds of information about autism awareness, education issues, biomedical treatment, legal issues, political battles, and, of course, I have read lots of parents' blogs. I have spent quite a bit of time on neurodiversity sites trying to understand their point of view. The same thought keeps surfacing in my mind. Not all autism is equal. This is not news to most of us. Just like each person is unique, so is each person with autism. We call it a spectrum disorder. The severity of the disability can range from mild to profound. There are autistic individuals with tremendous intellectual and verbal skills. There are autistic individuals who are nonverbal and are classified as mentally ***, like my son. We use descriptions like high functioning and low functioning. Some autistic children crave sensory input, and some children avoid it at all cost.And some of us swing back and forth between the two. When you compare biomedical profiles, they are not all identical. There seem to be different biomedical subsets that individuals fall into based on digestive function, viral response, and immune system function. Or should I say dysfunction? All of this measurable dysfunction can be mild or severe as well. Not all autism is equal.


I know lots of families with autistic kids, and I often visit the blogs of other parents of kids on the spectrum. The truth is I don't even relate to some things I hear and read. My ten-year old son is low functioning. Essentially he is nonverbal. He does not attend school; we provide a one-to-one home floortime program. His sensory needs are huge and interrupt therapy constantly. He has only just begun to be interested in other kids his age as playmates. He is not working anywhere near his grade level. We are working on pre-school/kindergarten skills. I have to admit that I am jealous of the stories I read on other blogs: attending school, eating in restaurants, participating in sports, working on friendships, having conversations. I want my son to do all all these things. I don't want to minimize other family's challenges. I know all families with autism struggle with the disability, and it is painful. There is nothing easy about it. But I still wish my son could do the things that other children with the same "label" are able to do. So in my mind, not all autism is equal.

Then I wonder. Is that part of what the disagreement is about? Is the neurodiversity group speaking from the high-functioning end of the spectrum? Is the pro-cure group coming from the low-functioning end of the spectrum? Do we really understand each other?This woman gets it.My answers to her are yes,and no. We are all talking about autism, but not all autism is equal. Do we really understand the challenges of each other's children? It's like we speak the same language and use the same words, but is reality being communicated? Whos on first. Whats on second. My child has autism. So does  mine. Sounds the same, but it isn't. Not all autism is equal.

Thanks for stopping by. Linda


March 20, 2006 | Permalink for this entry is http://www.arttocureautism.com/art/2006/...tism_.html
Oh,and I registeredthis domain today.It was either that,or "proud2Baneurobigot"

I think something that needs to be kept in mind is that we do believe in treatment for issues that are "co-morbid" to autism, such as non-verbality, sensory problems, etc.

Twin studies have shown that functioning levels have little to do with genetics (http://autismnaturalvariation.blogspot.c...dance.html). For example, identical twins have a 92% chance of both being on the spectrum (and I'm guessing the other 8% only miss out on a technicality), but only a 60% chance of both being autistic.

This would indicate that with the right tools, co-morbidities of autism can be alleviated.

Unfortunately, very little research is being done in this area, due to the emphasis on genetic research and the wider "cure" mentality.

So, to answer your question, the neurodiversity movement is about the entire spectrum, not just the "higher functioning" end.

This lack of understanding really made a lot of problems, especially for parents who were speaking from the pro-cure perspective. Fore Sam, a blogger, has gained a very ill repute, and for good reason. He talks about all kinds of things which are incredibly impolite. But he does have his reasons, and those reasons are pretty strong. He took a lot of offense to Aspies and others high on the spectrum, because they were anti-cure for the low end of the spectrum, yet they themselves were on the high end.

More than a few Aspies, and I speak from experience, have blindly gone onto his blog to attack him over his views, and are but reacting to his reactions. I myself did so, and I am ashamed of what I did. I had no right to say the things I said, and in the manner I said them. I recognized a lot of things gradually, and I better understand the viewpoints of each side.

I adapted, and changed. I still wince at the sound of trains, and bright sunlight hurts my eyes, but I can be sociable. I can handle interacting with people, and I know how to do a hard day of work. I am in no position to represent myself as low functioning, and so I do not. But I still believe that everyone deserves to be treated equally as people, and not on the basis of their differences.

Firstly I'd like to say that obviously everybody has or should have equality in their rights to respect, dignity etc.

My daughter is HFA, her autistic traits (sensory and social issues) are so interwoven with her personality that it would be hard to imagine her without them. I like her personality, so I have no desire to seek a "cure". These traits do create a few challenges in day to day life sometimes (for both of us), but no major problems. It's part of who she is, and we're both happy with that.

However my daughter also has several (apparently unassociated) physical/medical conditions. These disabilities are just that...they physically limit her mobility and limit her ability to develop independent living skills. So where possible I am seeking a cure/treatment for these conditions.

If my daughter was LFA and if she was non-verbal, I would seek help (speech development therapy) to develop her ability to communicate. If she had learning difficulties I would seek to develop her learning abilities to their best potential. I don't think that's "curebie", I think that's about "helping to achieve potential" and "quality of life".

What I think is worrying is stuff like "chellation", and some of the other dubious "cures" out there.  The causes of autism aren't yet understood, and a lot of this stuff seems to be based on very dodgy science. Some of it sounds like torture techniques, and I cannot understand anybody wanting to subject their child to that sort of treatment.

There is a big difference between having an LFA child and having an HFA child, all respect to you for the level of care that you cope with. But I think some of those "cures" out there do nothing but cause more trauma to to the children involved.

Twin studies have shown that functioning levels have little to do with genetics (http://autismnaturalvariation.blogspot.c...dance.html). For example, identical twins have a 92% chance of both being on the spectrum (and I'm guessing the other 8% only miss out on a technicality), but only a 60% chance of both being autistic.

EvilZakkie could you elaborate on the above statement (functioning levels having little to do with genetics)?

Are you saying intervention counts more than genetics?

Yep, pretty much.

I'm also saying that we don't yet know the types of intervention that would be successful, as there has been little to no research into it.

That being said, we don't really know much about what makes different people have different functioning levels - we just know that it's not genetic.

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I will check out your link, but it supports what my gut has been telling me for a while now- that the desire to succeed is internal and powerful and motivating. True for NTs as well...

this is related, but in calling Hope's school this morning I chatted with the new special education guy (self contained class, which Hope isn't in), whose right out of grad school. I threw some ideas at him (all of which he agreed with which was pleasant to say the least! ), gave him the "411" on the local disabilities board (for the most part don't bother I told him. For example their job coach who is terrible is responsible for training the high school job coaches! talk about the blind leading the blind I told him).

Anyway, he told me he is going to take his class (self contained) and Hope's class (regular special education) and have them tour various living arrangements/lifestyles so the kids can get some idea what a minimum wage buys, what a higher wage buys, and what a really good wage buys. He feels the kids are pretty clueless about the real world and what it takes to succeed today. I am excited about this!

My gut also tells me Hope may just be ok in the future (her internal ambition is strong). The other day she was at the podiatrist and straight off, before they inject her with  anesthesia, says "I am an Aspie!!! Do you know what that is?" Both laughed and said yes, it was her third visit (ingrown toenail). She also asked the doctor how much he made! She is incredibly money-driven. I was more idealistic (it was the sixties, after all) and not really concerned with salaries...

Or maybe it is and it isn't all at once. I read Survival of the Sickest not so long ago and was once again fascinated by epigenetic studies. Even when the gene is there it may or may not be expressed depending on a variety of environmental factors.  It has been demonstrated that environmental factors come into play in the first few days of pregnancy, before the blastomere is even embedded in the uterus. It is absolutely fascinating. And methylation/demethylation continues throughout life and across generations -- consider that every egg in the adult female is present at birth. And so, the female may exist in her environment such that her DNA methylation does not express the trait .... yet it emerges in her daughter.  It seems that having a grandmother who smoked is more strongly correlated with breast cancer than having a mother that smoked.  And how ever much more we do not know ....

Um... Likely few. Everyone I've met who's talked about it has some story about their childhood which makes me cringe in empathy. I guess we just made good targets, I suppose.

While most of this in my eyes was all TL;DR and seem to be more of "if you are parent you'll understand" Jibe.

In my eyes, I don't think saying "Not all Autism is Equal" is getting anywhere. It's divider and seperator. Yes Autism being a spectrum disorder and ever child is unique. But honestly. From what I have seen here in AFF, and in WrongPlanet as well as the Autism Hub blogs. LFAs and HFAs and Aspies alike all want equal rights, oppertunites and ethics. Saying this isn't like this is going to cause more divsion and talk in the like of "Well your {insert this label} so you wouldn't understand." In the techincal sense, Not all Autism is equal. It's very diverse and spectrated. But in the Human Civil Rights movement and everyone that is anti-cute and pro-rights. I see it as it being very much the same. Everyone wants to be seen as a human being. Despite one's dianosgtic lable.