Never the Twain Shall Meet?

Recently I have been posting on the characteristics my children share.  And share they do.

But the challenges they face are often quite disparate.

In my course of seeking answers, I have joined or been added to several boards.  Some for high functioning, some for low functioning.  Many of them are newly started, and the first posts often read something like this:

"I'm glad this board was started.  I was on some other boards, and their children are so different from mine.  I couldn't understand their problems, and they couldn't understand mine."

I often feel offended by this.  Because whoever was on that other board has a child like one of mine.  But whoever is on this board probably has a child like one of mine too!  I keep this offense to myself, because I recognize the lack of comprehension that goes into it.  Whether you have a child on Level 1, 2 or 3 on the spectrum (per the new DSM), you often don't comprehend the issues the other levels face.

If your child is very verbal, has some quirks, is affected by self-doubts and anxieties, his issues are very different than the child coping with self abuse, lack of communication, and fecal smearing.

If your child is in a self-contained classroom you both face very different issues than if your child is fully integrated and coping with the cacophony and probable misunderstanding from teachers and classmates.  If your child is in a support classroom, you often know exactly what happened from minute to minute.  Whereas a child in a fully integrated class has a difficult time telling what went on with his day.  If he ate.  If he understood the instructions.  If he played with anyone at recess.  If he was bullied.  This is different still from  the child with support in the mainstream classroom.  Who stands out as different because of the adult tagging along, but who is more monitored.

I complain often that folks higher on the spectrum do not grasp the issues of those lower on the spectrum.  And I see a shunning-"I am NOT like that.  There should be a different diagnosis for me."  I see it in the parents also.  Both sides say "They don't get MY problems."

But then we turn around and say "Autism Acceptance."  "Different, not Less."  "Society needs to accept my child for what he/she is."  

And the problems ARE different.  But overlapping.  Because autism is a spectrum.  And, as my oldest has proven, the nonverbal child of today may be the verbal, anxious child of tomorrow.  We cannot separate the levels with a sharp knife.  They are interwoven, forming a tapestry. 

Each side has something to teach the other.  And each side needs to listen to and support the other.  And push for public acceptance and policy changes.

But more than that, we need to be part of the disability community.  Autism gets a huge share of the disability press.  But our issues are issues for all other disabilities.  Access to school and health care.  Dignity.  Thinking of people with disabilities as less than, and teaching and thinking down to them.

We tend to be autism-centric.  We think of our children and ourselves first, as we should.  But then we need to think of our community.  If we expand our thinking to others with intellectual and physical and learning differences, we gain political and financial power.  We share information that is not particular to one disability.  There is power in numbers, and there are a lot of numbers out there. 

In the desire for a better life for our children and ourselves, we are not alone.  Many people are out there fighting the battle for better schools, better therapies, better jobs, better lives.  Autonomy and independence.  Self-actualization.

In this, we are alike more than we are different.


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