There are more and more people like me in the world. My son's autism was diagnosed when he was 5, after having been termed "pre-primary impaired" for 3 years. As he developed and grew, it became obvious that his autism was quite severe. At age 20, he is not really conversationally verbal. He hoots, hums, jumps, skips, and paces through his day. He has low tolerance for errors in building mechanics, weather forecasts, faulty or illogical wiring. He is immediately drawn to the thermostat in any room we enter, which he inspects thoroughly, no matter what the proximity of other people or the location of the thermostat. He likes routers. And telephone/computer networks. A lot.
At the same time, our family, the school systems in town, and many, many people have spent the past 15 years making decisions to teach him to complete tasks as directed. With an occasional slip, he will do this at a fairly high level within computer-related situations. He is prompt and courteous in the workplace. He will do high level repetitive work that either people cannot be trained to do because of their inability to work at this level, or consider repetitive because of their ability to work at levels where more decisions are necessary. He fills an important niche in contemporary IT situations. And people are afraid to hire him.
I understand. Budgets are low. Corporate structures have job descriptions that include things that disqualify him for certain jobs. He is large and he doesn't really talk to people. He is unpredictable at times. Working with him can be uncomfortable and annoying at times. He scares people. He can be seen as a liability. People are afraid of lawsuits. People are afraid of precedents, so if they hire him, they would have to hire the next autistic person, or they tried one autistic person once and it didn't work out. All of these things are true.
We raised our son -- our community raised our son -- not to think that he is "disabled," but to be integrated into the communities around him. This took a lot of work on my son's part and on the part of many, many people who spent much time and energy teaching him to perform tasks and be part of communities in a mutual way. We taught him (and he learned) that he needs to work, as well as he can, at the expectations of those who supervise him, no matter what he "wants" to do during those hours. He can do this and he does this.
And I am so completely frustrated right now with structures that "protect" institutions and corporations, and even individuals instead of giving adults with autism the opportunity to figure out work situations that will be beneficial for them, and for these institutions and corporations. I understand. Completely. And if it doesn't work out for everyone involved, it will not work out for my son. But it seems that with all of the talk of making autistic people part of "our" society, this last step -- integrating them into mainstream workplaces in ways that will work for everyone involved -- is proving very, very difficult.
Don't get me wrong. I don't expect that exceptions be made for him in order to give him special "privileges" that make him "disabled" in the eyes of the society. I don't want him on disability. I don't want him to think of himself as "disabled." But corporations and institutions are largely set up, like the rest of the world, for the convenience of those corporations and institutions and the "normal" people who have worked through "normal" channels to get "normal" jobs as described. And I can't help but think of it as discrimination of the kind that is opposed by these very same people on almost every level but this one. With just a bit of tweaking, my son, and growing numbers like him, can truly be beneficial to our society in ways people have not even begun to consider. And the "trick" for me is finding someone to give them a chance.
For me, this means working with people I'd rather not work with sometimes. I'd rather get an advocacy group, come in with guns blazing and force them to do what seems like the obvious thing to me. But this doesn't work anymore at this stage than it worked, in the long run, during his education. Instead, it continues to take education -- not only of my son, but also of those with whom he potentially works. And it takes patience that I don't have every day.
I would love to hear honest discussion about this -- beyond shouting back and forth. How do we get beyond a stalemate that is costing our society in many, many ways? These folks are out there and they are coming of age. How do we integrate them into our society in a way that is beneficial for everyone, taking into consideration not only the needs of these persons with autism, but also the needs and limitations of corporations and institutions? What do you think?
Sara Winter: Making Your Kids Love the Classroom
Even those who would help rarely understand that even subtle differences from one autistic person to another can skew expected results. FOr instance, although my son qualified for vocational rehab services, he would have been required to attend a full week of workshops, from 8-4, an hour away, and in regular settings with lights, noises, etc. Well, if he could do that, we'd not have much of a problem and he'd have fit well into a regular school environment. (College is much more sensory friendly and less rigid -- so my kid that never really could go to school is just fine at a local uni.)
And that's the problem - people would have to understand that tweaking is paramount. I do highly reccommend that teens and their parents attend one of Michele Garcia-Winner's workshops on transitioning ASD, ADHD, and Social Anxiety suffering teens to adulthood. I took my son to one. He was the only teen there...and yet HE pulled more about himself, specifically, out of that than I did. He recognized his own issues and could chose from the menu.
The first step is identifying an employer open to hiring an individual with disabilities. Then you come up with a game plan on how to deal with ALL of the possibilities, to help the individual be successful. You also want to appeal to the employer with facts such as (in my state of VA) there are tax advantages to hiring individuals with disabilities. Successful placement comes down to very individualized plans with specific supports that allow the individual to be as independent as possible in an understanding work environment.
I have since moved into forming my own company that focuses on bridging these gaps in services and provides functional, appropriate, individualized, and transferable accommodations that increase independent functioning, provides training to increase “employee characteristics” and training for the employer.
I wish you all the best and much success for your son! Feel free to contact me adaptteam@mail.com.
http://www.youtube.com/watch?v=QfMePz5zFeE&feature=related
not of huge importance as I worked with elementary students, but an issue of tantamount necessity! I would love to hear of others' suggestions, especially in terms of employment in the private sector.
I'm not an expert. I know I couldn't find anyone(believe me we looked) who had a realistic, whole plan to help this young man find a niche where he could have friends, a social life and not be an adult child that mom has to supervise, entertain, care for. If the best job they could offer is bagging groceries then I knew my son would fail. He is aware when people speak to him like he is stupid. Doesn't everyone deserve to be treated with dignity?
He has been to several programs where he is supposed to learn job skills. They don't seem to look at the adult's ability or try to make the work situation possible for our kids. It was pretty cookie cutter.
They have skills that will benefit an employer and society but they are different for each adult.
We are involved with a fledgling program that has a vision of a community within the community. The work will be brought in and they will be productive without having to navigate the social complexities. At present they are primarily doing "computer stuff"(my term) Some have created apps.
My son drives, has an apartment, has a girlfriend, a few friends but mostly he is engaged in a life that he wants. I'm hoping some work will be in his future.
I can assure you that the child you see at 11 will be very different at 15, 18, 21, 24 and even 27. He has more maturity every year.
Disability wise, the government agencies that we have worked with are kind, thoughtful and severely under manned. Most importantly we didn't really meet anyone(in 2 states) who really knew what my son needed in terms of job support or even types of jobs. Of course, once you decide on a job, there is difficulty in finding one. It's just not a comprehensive job program. I thought sorting boxes for UPS or one of the other companies would be ideal. He went for cattle call after cattle call with no call back. They weren't interested in taking a chance.
Socially our children are awkward and different. They don't look, dress, smell or talk like the rest of the group. Their interests are strange and they tend to have no filter when talking. They become invisible just like high school despite a few who try hard to integrate our adult children into the social areas of a job.
We tried social groups at every different age. I found them well meaning but very child like, insulated and almost patronizing. 2 hrs a month isn't socializing. I do not want my adult son to be babysat.