The Vicious Cycle

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I had an argument on a parent list that I’ve been a part of for just over a year. I love the organization’s leader as she’s also Aspie and great to bounce ideas on. But this recurrent theme that I keep seeing keeps leaving me in tears.

Without going into detail about the specifics, I feel that the theme is very important to touch on.

It’s about educating, training, accommodating then allowing a person to live independently. As Autistic adults, we know how hard all of these things can be. For myself and many of my knownreaders, we all are pretty permenantly disabled for one reason or another. We made it through our teen years some easily, others much more difficultly. This is the nature of the Autistic life.

When I drive home the three A’s of Acceptance, Accommodation and Accessibility, the recurrent idea is that these things are not happening. General population acceptance of our disabilities is definitely not there, but that’s something we will continue to work on.

What I find difficult is that within parent circles, it’s okay to be accepting of your children’s differences, but when it comes to an adult, especially another parent, there is far less acceptance, to the point of personal attack on the person. When I attack an ideology, an organization or other such things, I am not attacking a person. Yet, when I do attack these things, I find myself more often than not insulted in one or more ways. Either because I don’t “represent” the “true” “reality” for many Autistic adults, or because I “attack” or “complain” too much and am not willing to “do anything about it.” If it’s not that, then I am accused of attacking someone personally even if I was very direct in criticizing a group or ideology with no personal flings.

This is difficult enough for me to handle. But then to be further insulted that just because you live with someone with Autism, means that you automatically know what it means to live with Autism. Independence is very difficult for many of us. If I did not have my husband, I would not be considered “independent.” So when you’re supporting financially, emotionally, and/or physically, an Autistic child, it is not nearly the same thing as we “independent” adults live with every day. What happens when you’re gone? How are they going to support themselves?

Many of the programs out there cost exorbitant amounts of money to train your child only for them to live and work in a sheltered program. Is this what you want for your child, or would you rather they be “independent like me?” I know I’m preaching to the choir. But why in one breath are we Autistic parents seen as extraordinary, then in the other unrealistic in what we want to see out of programs and services to address our brethren?

I really want to understand this. My husband says I never will because I’m working from the idea that everything is logical. (He’s right, by the way.) If you want your child to be independent, to not want to worry about what happens to your child when you are no longer around, or no longer able to take care of them, why do you scoff at our ideas? Is it so much to ask that instead of training a person to work in a sheltered workshop, that you instead give the supports to work in a normal workplace? If they are having a hard time coping with certain work situations, why are you taking them out of the workplace and putting them else where? Wouldn’t 1) Emotional and Job support, 2) Life Coach or 3) Job liaisons help the person stay where they are qualified to be as well as give them the skills to take it to another place?

In the end, if they can no longer work in the sheltered workshop, where will they go? Most likely to a group home or institution if you as parents are no longer able to support them or be there. How is that helping the person? And do you truly think about these things when you set up the “great” programs? Or are you just looking for the next year or two?

It keeps going round and round. And until someone stops to think, I do not think it will ever change.

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