I’m quite lucky really. Once my ex and I separated I started seeing someone else. This other person also has a child with autism. Now that we live together I have experience of two shades of autism.
My own child has profound learning difficulties as well as autism. My step child’s issues are more to do with sociability and her environment. My own child attends what is known in the UK as a Special School. My step child is in a mainstream setting. It is felt by all sets of parents that both children are very much in the right environment.
As a result of this exposure to two shades of autism, my own views of what autism is have altered a little in some ways and in others, become more firmly held. The way they have altered is that I am now, as noted by some, more amenable to seeing autism as one more thing than a difference and a disability – it is also a medical issue. What do I mean by that? Well, for example, my step child has a different set of issues under the terms of the DSM IV (and the DSM V) as my own child. However they are both still fully and diagnostically autistic. Before, I would’ve simply accepted this as ONLY a different shade of the same thing. Now, I see it as a difference which is medically diagnosable and also disabling in some ways and very enabling in others (my step child is a maths whiz, far far ahead of her NT peers).
In what ways have my views on autism become more entrenched? Well, being responsible for two children on the spectrum who are markedly different from each other in diagnostic issues might have led me to doubt autism as a valid diagnosis at all but it is the similarities they both have with each other that leads me to believe that I am right to consider autism as something more than just a disability. Is it a disability at all? Yes. Autism has disabled both my child and step-child. Is it a difference? Yes it is. These two kids are different in positive ways.
There are people who take me to task for suggesting that I don’t believe autism must be cured. Thats fine, they’re entitled to their opinions. I would suggest however that they haven’t considered the shades of grey that exist between two people with autism, let alone the whole huge spectrum of differences that must exist.
They also take me to task saying that, if a cure ever existed I wouldn’t cure my child unless she asked me too. They take the literal view that because my child is non-verbal she can’t ask, therefore I am denying that cure. There are of course a multitude of issues with that stance. First is the face that kids – even (shock) autistic kids – develop over time. Just because my child is non-verbal now doesn’t mean that my child will always be non-verbal. Second is that fact that non-verbal doesn’t mean non-communicative (See Carly’s Voice for a prime example). Third is the face that my child’s autism is not the greatest challenge xe faces. That challenge is her learning difficulty (intellectual disability in North America). I could remove autism tomorrow and still my child would be profoundly affected by a disability.
Things are never cut and dried. Black and white. The answers to a lot of issues (not all) lies somewhere in the middle. For those who immaturely expect their to be AN answer, good luck to you. I hope you find your answer. Don’t however, think that your answer is THE answer. I have no idea who said the following but I think its spot on: “follow the man who seeks answers, flee from the man who has found them.”
As I've said before, autism is neither a gift nor a curse. It simply is what it is.
It's hypocritical to tell everyone "when you've met one autistic, you've met one autistic" and then go around telling everyone else how they're supposed to view autism.
Ari Ne’eman would have the world think that every person with autism is a savant.
Meanwhile others like AoA would have the world think that they're damaged and defective, incapable of having a life.
I'm quite sick of people telling everyone else how to think based on their own limited experience.
It's not black and white. It's called a spectrum for a reason.
not meant as a criticism, but aren't they both your "own" children now? Often times language doesn't give us all the tools we need.
Indeed - but I was looking for a way to reference them without mentioning their names :) exposure to the John Best's of this world they don't need.
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Thanks for sharing, and the author of that illuminating quote is Vaclev Havel.