I wasted my morning. Two plus hours of my special ME time while PanKwake is with her carers. I could have been shopping, cleaning, sewing or most importantly writing. How did I waste it, you ask? By attending a support group meeting for parents with autistic children. But wait, how can that be a waste, you say? Because as I have said before…Asperger’s or as the ‘idiot experts’ now call it ‘high-functioning’ is NOT the same thing as ASD. I have no more in common with the mothers around that table, whose children are non-verbal than I do with parents of ‘normal’ kids. In fact, I probably have more in common and get along better with the ‘normal’ ones.
I gave up this group three or four months ago when every single meeting was about statements and special schools, a path we have decided is not right for Pankwake. But every month the organization that runs the meeting asks you to feel out a feedback form…and every time I asked for information on ASPERGER’S. So this week I got both an email and a reminder call that it was time for the next meeting and that they were having a speaker from an Asperger’s group. Since it was at the same time as one of PanKwake’s regularly scheduled carers, I figured after pestering these folks for months, I at least owed them one more chance.
And boy do I wish I had not. Despite the title and the fact that this person was from an Asperger’s group, she spent more time talk about her other son that was further on the spectrum, and the same old crap about statements pre-dominated the meeting. To make it worse one of the staff members of the organization that hosts the group talked more about blooming statements than any thing about Asperger’s.
I am trying to think of ONE thing that I learned about Asperger’s and I cannot. At the end of the meeting, the woman from the ASPERGER’S organization spoke to me on the side and said she felt that the group was just so diverse that she needed to make it more general. I impolitely informed her…that those parents got what they needed at every other meeting I had ever attended and I was horribly disappointed that the one time it was supposed to be relevant to my situation…it was not. The organization that hosts these meetings receives massive funding from the council to provide support to all families of special needs children in the borough. I am beginning to understand that Asperger’s just is not special enough for them.
As I said in that other post, the problem with removing the distinction of Asperger’s and lumping our kids in with the Autistic Spectrum is…that our issues are different. I do not struggle with what is going to happen to my child after I die. I know that she will eventually be able to attend university…with support. And find her own place in this world, contribute to society, even if she is not a nine-to-fiver. My struggle is how to manage her behaviors in the here and now…until she matures and learns better coping skills. My frustration is with a society that automatically assumes my child is naughty and I am a bad mother…those other mothers never will know what that feels like because their kids LOOK autistic and as a result those same mean people go out of their way to help the poor ‘disabled’ child. And don’t even get me going on how skewed the education and social care systems are to meeting their needs and leaving us to sink or swim on our own.
Is it too much to ask for even ONE organization that can offer true support with the issues relevant to families coping with ASPERGER’S? Obviously it must be when even one carrying that name sends a speaker more concerned with autism than Asperger’s. And thanks especially to the ‘geniuses’ at the APA (American Psychiatric Association) for erasing our very existence from the DSM-V (Diagnostic and Statistical Manual…the bible of all thing mental health). It just makes our lives all the more difficult when we ask for support from these types of groups, the council or education.