There is a wonderful blogger that I follow, Mae who writes, Autism Is Not the Boss. She has written an interesting post ASD terminology: ‘autistic’ vs ‘individual with autism’ As usual since, I generally have alot to say, I commented on her piece and we had an interesting discussion about my boys. How would they describe themselves? Which vernacular would they use? The interesting thing about my boys, though, is that they would never even think to describe themselves in terms of autism at all. Which in many ways I think is a good thing because they do not let their disability define who they are or what they want to be in life. However, we, as parents, are actively seeking ways for society to accept their idiosyncrasies, So the question I think becomes, how do we balance the need for them to live up to their potential, while making society more open, yet not allowing our children to be defined by their issues. It really reminds me of a Catch 22.
If we want our children to live a full life, then they must learn to live within society and follow society’s rules. Autism is not an excuse for them. We cannot let their autism define who they are, and that includes making excuses for mistakes. If we do then society will marginalize our children. They will refuse to see them as equal members, members who by the way have a huge amount to give to society. While once persons with disabilities were shut away in attics or hellish institutions, there will become another type of shutting away. They will be left on the outskirts of a world not ready to accept just how different they can be. Society will feed them, house them, clothe them, but not truly care about them. Society will pat itself on the back and tell itself how wonderful they are because the disabled are among them, but will not regard those with disabilities as full members. Society will pity them, but not understand them. I think to be pitied would be the worst marginalization of all.
Awareness has to spread for all of our children. Another wonderful favorite blogger of mine, is Squidalicious. She actually defines autism: we’re here, we’re quirky, get used to it. I think it is a bold statement. I think it is an empowering definition. I think it shows an inordinate strength. It is a demand to forge a conversation with society and quite frankly society had better listen because we are not going anywhere. Will power is an amazing thing. Changing society and society’s perception is an amazing goal. There is so much work to be done. We are not going anywhere and society had better listen.
But how do you get your children to define themselves beyond their autism? It is no doubt a part of them, but it is not the defining part of them. They are oh so much more and that is the part that needs to get emphasized. I suppose we wanted it that way. We wanted society to not see us as the disability family. I purposely stayed away from the special education committee of the PTA, while quietly being a parent member/advocate for the District Special Education Committee. But I volunteered a lot for my schools: ran book clubs, catering committees, welcoming committees, health and safety committee, was class parent, even treasurer at the high school (don’t ask me about that one). I was a presenter for a county based law organization to multiple middle schools about civil rights. I also created seminars about the US Constitution for HSB’s middle school and an ethics class for my Temple. Hubby, when he is not working 24/7, runs the Emergency Response Committee for our town. We showed our boys that we are more than our issues. That we are members of all of society. We just happened to have a disability that’s all.
This is why on top of multiple therapies, psychologists and the myriad of doctors we went to religiously, we put the boys in sports, clubs, after school activities, and religious school. We even made sure that most of their club time was spent caring for others. Whether it was Habitat for Humanity (through Jteen/UJA), bagging food for the homeless, clothing drives/sandwiches for Midnight run, working at the Food Bank, helping at a church’s Christmas dinner for the homeless, advocating to Save Darfur, Amnesty International club; the boys were always taught that their obligations were to society at large. It’s why collegeman took my credit card that time and gave to charity without permission. It’s why they would give the shirts off their backs. It is why collegeman wants to go to law school; he wants to save the world. This is who they are because this is where we, as their parents, placed the emphasis. We taught them that they are more than their autism. We taught them before they are persons with an autism spectrum; they are first and foremost persons and part of the society inwhich they live.
So, yes, I think while there is a Catch 22 concerning our children we have it within our power to make sure that our children are not caught up in the conundrum. As we advocate for a more understanding society, we must teach our children that they are more than their autism. It is never an excuse and that they are to never be defined by a disability. That while society has an obligation to give them the same chances as everyone else it is up to them to succeed. It is up to them to define their destiny. That they, like everyone else, have the right to be defined, as in the words of the Rev. Martin Luther King, Jr, by the content of their character.
Until next time,