It's been a bit of a dilemma for me these past few years, being torn between being proud of who I am, being happy to do speeches and such at conferences, or even give interviews in the paper, and worrying about a general public, including employers who know little about autism save for what they read in the papers (and we all know how the media portrays autism, don't we?).
Most of the problem for me is what I call the "bad PR" or "bad press" about autism. Sure, it's hard for families, and even harder for those of us on the spectrum, but the negative words used with autism "destroyer of families", "epidemic", "fate worse than death", "abductor of children", "disease", "behavioural problem" don't make it any easier for us to get ahead if we can and want to!
There are two major ways to make money providing goods or services in this world:
1. Provide a product or service that people need or want really bad and they will buy it, or buy into it. The trick is to gear it at the people, making it look that like they absolutely need this product or service. (Look at things like ABA - they say it's 'medically necessary' and make tons of money off of parents who are not medical professionals and are usually facing the facts about autism for the first time making them very vulnerable!)
2. If the people do not directly need your service, but you need to raise money to provide it to those you think do need it (non-profit societies mostly), then you need to target the public where it hurts: their emotions.
You need to make whatever you're raising money for look so bad that people will feel sorry and throw money your way. You need to use words that trigger emotions like "devastating", "tragic", "epidemic", "terrible disease" and "fate worse than death".
You need to paint a bleak picture for the public and then make it look like you have the answer or the cure. It will certainly make you money, but what of those you are targeting your service at? What sort of picture are you painting for those who may not need your services as much but get painted in the same negative way? In this case, autistics who are able to live independently and work? How easy is it going to be for them to live their independent life and work their meaningful career with that sort of negativity being spread around?
Not all of us are unable to work. Not all of us need extra services or funding, yet we still fall into the same category and have to live with working twice as hard to prove that "we're not all like the people the societies and parents are portraying".
I am more than able to work and I enjoy doing it. I'd go nuts if I couldn't work! I've been doing it since I was 13 and I will work for as long as I can. With the shadow of the negative press hanging over me, that makes it hard me to get ahead. Instead, I've had to prove myself. This I've done with things like Toastmasters, serving in leadership roles and just proving myself worthy at work.
What sucks is that I've had to work way harder than my coworkers to do this because there's the "pretending to be normal" factor, plus having to work twice as hard to prove that I am more than capable to do my job and work my way up to middle management. I work best in middle management, because I have more control over my situation and do what I do best, which is helping other people do their best and get ahead. I don't like being someone's grunt.
It is, of course, against the law in most countries to deny someone work based on a "disability" of any sort. However, most employers circumvent that by just not calling you for an interview in the first place if they know you are disabled.
In my case, I changed my first and last name and have an excellent resume. Now, I don't get equated with the "A" word when looking for work, and this has helped immensely.
Eventually, I will have earned the appropriate degrees (I'm in University now) to start up a practice as a psychologist and provide the one service that seems to be seriously lacking: service to teenagers and adults on the autistic spectrum who have spent a lifetime being told how defective, tragic and worthless they are.
I want to be able to provide a diagnosis to those who need it; provide counseling or coaching with a strictly autistic focus (rather than trying to use NT counseling tactics, which is pointless to say the least); help get the right services for someone who is having hard time getting them, etc.
I don't want to cure anyone or force them to pretend to be normal like other "therapists" and such have done in the past; but I do want to help people find value in their lives, work with whatever is bothering them and help them create the life they want or need for themselves on their own terms. I would like to see people going out in the world, knowing and accepting who they are and succeeding in the way they consider success anyway.
I want to help heal the damage done by most childhood therapies and help people empower themselves so they can at least have as happy an adulthood as they can. All people should have happiness in their lives, and be able to access that happiness.
No person should ever grow up feeling worthless, or want to kill themselves because they've been led to believe they are defective their whole lives. I've been there. I've wished there was someone who could provide this sort of service to me.
I may be completely off base, but I see a need and I want to fill it. We'll see where life takes me in that regard.
That is my dream for a meaningful career.
