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Autism neurodiversity: Who speaks for the severely autistic?

I suggest reading this, even if you disagree. Especially if you disagree.

Autism neurodiversity: Does facilitated communication work, and who speaks for the severely autistic? - Slate Magazine

For those unfamiliar with this blog, I do not consider myself a "neurodiverity" champion. I am not going to claim that "autism" is one thing or that all autistics have similar needs — any more than any group of people can be generalized. I find there are fewer commonalities among autistics than other groups of individuals with physical or neurological challenges.

I understand and appreciate the motives of the Autistic Self-Advocacy Network, the Autism Network International, and other groups organized by and for autistic individuals. I also understand that parents with children dealing with serious physical and cognitive challenges feel limited connection to the "high-functioning" stories of success.

My wife and mother both know my physical and neurological limitations well. It was my mother who guided me through years of physical therapy. It is my wife who has helped me deal with various medical issues over the last two decades. Migraines, seizures, palsy, and so on. Yet, I would never, never consider my situation all that bad. Inconvenient? Yes. Severely disabled? No.

Intellectually, I don't consider myself disabled at all, though neuro-psychological exams have identified strengths and severe weaknesses. The simple truth is that I am academically skilled and know how to take mosts tests. I earned perfect grades in my master's program and nearly-perfect grades in my doctoral program. I was an honors student in high school and in college.

So, my limitations are not intellectual. I can care for myself (though my wife might argue that point), I care for the cats when alone with them, and I function fairly well on a daily basis.

My life is not the same as that of the adults and children I have met in residential programs. Their experiences are not mine — they need far more help and support. Their families also need more help and support than I now require. (Not to say I never needed medical care or special services, but not a lifetime of 24-hour care.)

Most people don't recognize me as "autistic" or as having "autistic traits."

It is when I am tired; it is when I have had a seizure; it is when I am subjected to a sound, bright light, or other sensory experience; it is when things "go wrong" that I am most obviously "not normal" and cannot manage to deal with the world around me. In those moments, it is obvious something about me is different.

So, when I read the stories of parents with "severely impaired" children, I do understand that their needs and experiences are unlike my own. But, that doesn't make their stories or my stories "better" and more important to address.

Because I don't consider "autism" one thing, I don't pretend to represent any one group. My experiences are mine alone. The best thing we can do is listen to parents, individuals, and experts. We need to hear and appreciate the various experiences of these people. We need to ask about each case and consider what we can and should do for the person with special needs as an individual.

Last week, I read a blog post suggesting that the "high/low-fucntioning" and the "mildly/severely-impaired" modifiers are unhelpful. I am not so certain. Maybe there are better terms, but I also understand that there is a scale of physical and cognitive impairment. I don't know what the best identifiers are, but the father I met with a son in a group home knows that his son is not like me. My needs and his son's needs differ significantly.

Reading the article in Slate, I dislike some of the author's statements. Yet, I also appreciate her views do reflect a sense that many self-advocates are unintentionally creating tensions.

Dialogue is what we need, but it seems to be a constant "screaming match" online. That's a shame.

Comments

  1. We need YOUR help! Donate now to Helping Hearts for Autism, and give to families in need who are affected by autism.
    By making a donation to Helping Hearts for Autism, you can make an incredible difference in the lives of families like these. With the money collected, Special Learning will give away as many $500 grants to families as donations will allow along with an in-kind match of $500 in Special Learning products to these recipients. Families will be chosen by an unbiased selection committee on a quarterly basis. The need for donations for families like these is SO great, but if enough of us come together, we can certainly make a difference.

    Please visit http://www.special-learning.com/helpinghearts_donations to know more on how you can help.

    ReplyDelete
  2. What about something like this?

    http://www.outcomesstar.org.uk/autism-and-aspergers-star/

    It's not perfect but it does recognize the 'spiky profile'

    ReplyDelete

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