Saturday, June 6, 2015

Making Demands In The Name Of Autism

My son has autism. I am his advocate. I make sure he has the things he needs to be successful in school and in the community. Usually I can get what he needs by asking nicely. Occasionally I have had to beg and a few times I have had to become demanding. Once I even raised my voice. But I do not feel I have ever asked for anything that was unreasonable. Of course, that part is a matter of opinion.

Even though I do not feel I ever asked for anything unreasonable, I have not gotten one hundred percent of what I asked for either. I have never filed a lawsuit. Oh, I could have. Once, I found that Tate had been without his para support at school for a day because another child had moved into the district and she needed support too. Instead of hiring another para, Tate’s para was supposed to supervise both small children and basically be in two places at once. Another time Tate was left to wait for me to pick him up with no adult support. When I pulled up he ran between some moving cars, then dropped his artwork and chased it across the parking lot. He was six and his IEP said he was to have full support from drop off until pick up.  

But this post is not about IEPs or dealing with the professionals that specialize in our kids’ needs. This post is about making unreasonable requests or demands of people in our communities in the name of autism. In my opinion, a reasonable request is when I ask for a lid on a drink so my child does not spill. A reasonable request is asking for a few extra minutes in the bathroom because he has trouble with getting his pants unbuttoned and buttoned. Ramps, service animals, Paraprofessional support, visual schedules, and things like pre-boarding an airplane are reasonable accommodations in my opinion.

Schools are required by law to use accommodations and modifications for children with handicaps. Of course, businesses and organizations are also obligated to serve people with handicaps. Discrimination is illegal. But not everything we do not like is discrimination. I do not believe businesses and organizations should be required to jump through hoops of fire to prevent lawsuits. If they are making a reasonable effort to accommodate people with special needs then they should not fear the autism community. Recently there was an incident in the news about a mother of a child with autism requesting a hot meal for her child on an airplane. The mother mentioned that her child might scratch someone if she did not get a hot meal and the pilot landed the plane and the family was required to get off the plane. I think the pilot over reacted for sure. But he was within his rights as a pilot. The autism community was up in arms. Not everyone in the autism community thought the child with autism should be entitled to a hot meal but it seems the majority believed the airline employee should have done everything in her power, including giving away one of the first class passenger’s meals so the child with autism would calm down. I’m not so sure. Trying to put myself in the shoes of the flight attendant and pilot, I consider the rules and regulations I have to follow to keep my job. Trying to put myself in the shoes of the mother calming her child, I consider how awful it is going to be for the next few hours for everyone around us (including my child, of course) if I do not get her what she wants. I cannot be sure what I would have done in either situation.

I have a child with autism. I am sympathetic to children with special needs. I advocate for two constantly. Twice recently I have found myself in a crowd of people trying to hear the instructions being given while a child with autism screamed constantly. Recently I was on a cruise. I was listening (actually just trying to listen) to the procedure involved in abandoning ship if it became necessary. Does the screaming child have a right to be on a cruise? Of course! Do the parents of the child have a right to be participating in the activity I am involved in? Of course! Does the crowd of 300 people gathered for the ship’s safety instructions have a right to hear the safety instructions? Yes. We do. But we did not hear everything. Ironically, the bit I was able to hear was regarding handicapped people, women, and children, being given seats on a lifeboat first. We have come so far. We as a society do value the lives of those with disabilities. They are no longer locked away in institutions. Thank God! They are now included everywhere we go. And, they are often listed as top priority in procedures like this one. Most of us would not have it any other way. But at what point does the right of 300 people who need to hear, supersede the rights of the child with autism and the parents? Or do the 300 people all have to give up their rights anytime a child with autism is present? If the ship crew had asked the parents of the child with autism to remove her from the presentation, would they be threatened with a lawsuit immediately? What is the solution? 

People with disabilities are supposed to be given equal rights. It is the law. But are we asking for much more than “equal” for our children? Can we demand things in the name of autism that seem a bit unreasonable (or more than just a bit unreasonable) to the people around us? Can we demand a hot meal on an airplane when it is not a part of the procedure? Can we demand our child get a cheeseburger when we are dining at a Chinese restaurant? Can we demand our child go to the front of every line at theme parks in the name of autism? It is so hard on our kids to wait. But, what about typically developing toddlers? Isn’t it awfully hard for them to wait in lines too? Why don’t we bump all the two year olds to the front of the lines as well? Sometimes I am not sure we are asking for fair accommodations. Sometimes I believe the autism community is making requests and demands that are unreasonable, all in the name of autism. And sometimes I think we are getting a bad reputation for making unreasonable demands. I really do not want everyone around me to fear a lawsuit if Tate does not get what I ask for.

Just some things I have been thinking about. I would love your feedback. I’d rather not start a lengthy debate about hot meals on airlines as that has already been done over and over in the autism community and I think everyone is weary of it. 

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