Tuesday, August 28, 2012

On role models, and who can and cannot be one.

First, the good thing: people are (finally) coming around to the idea that Autistic adults are logical and appropriate role models for Autistic children and teens. 

Now the not good thing: some organizations and individuals are applying ridiculous standards to who can and cannot be considered a role model. One group is defining acceptable Autistics as "those who have a degree and are working full time in the field they studied." People who meet those criteria are Autistics it's acceptable to look up to. A spokesperson for an organization using these criteria opined that "anyone can get a degree, but not everyone can work full time," while reiterating that to be a role model an Autistic must be doing so.

Can we see the problems with this?

First, no, not everyone can get a degree. They cost money, they cost time, and universities and colleges are not places that accommodate everyone. Yes, they are required to have a Disability Services department. However, there are some people who are not capable of earning a college or university degree with the offered accommodations-they might have cognitive challenges or learning challenges or an inability to function in the environment. Or maybe some people don't wish to-maybe the stress and the thousands of dollars of debt aren't worth it for them. We don't all have rich families.

Secondly, the criteria of "must be working full time" excludes people who are really worth emulating. Some people, for whatever reason, cannot do 40 hour weeks. Maybe, again, they don't have the stamina to power through an entire week of sensory hell. Maybe what they are qualified for is by nature not a full time gig, or perhaps they are juggling 2 jobs like so many people are lately. Some people make other life choices-some Autistics have children & choose to devote some of their time to raising them. Other Autistics choose the self employment route. And some Autistic people partially or completely rely on SSI or SSDI. Contrary to apparently popular belief, not being able to work (or work enough to support oneself) is not a moral failure. People who get assistance also have worth by virtue of being human.

By the criteria of "working full time in the field one studied to get a degree", almost no Autistic is a role model, and a large number of the next generation won't be either. We are very much an unemployed and underemployed crowd. This criteria set is extremely ableist and classist.

Not only that, but it excludes people not just from the position of mentor, but also mentee. A lot of Autistic kids, right now, they are not going to be getting a college degree, and that's ok! There are a large number of Autistic kids who are going to grow up to receive SSI payments, and that's not a moral failing on their part! There are things some people are not able to do, and that is how it is.

Don't these Autistics also deserve role models? It's so important that our youth who aren't Temple Grandin see that they can have a good, full life within their capabilities. It is extremely frustrating to be told that there's 1 or 2 'appropriate' role models, only to realize that their capabilities and circumstances are nothing like yours. A role model is someone you can look at, say "I want to be like them when I grow up," and then actually be able to do it. 

Don't do our next generation the disservice of leaving them out. Role models come in all kinds, not just traditionally economically successful varieties. Acknowledge the diversity of our stories, embrace the different kinds of success. Not everyone can work full time or have a degree, it's true, but everyone can have a life that is full and meaningful.


A Part or Apart? said...

Wonderfully said, and needed to be said. I might add that making that kind of definition is pretty much internalizing the oppressor....

Lynn said...

Sometimes its valuable to know where the problem areas are so the mentee can avoid them. I wish I had known how to use accommodations and why they're useful.I could help a young person with my knowledge gained the hard way.

Ariane Zurcher said...

By these standards most neurotypicals would not be considered "appropriate" role models either. For more than a decade I was in and out of jobs, had trouble paying my rent (and would not have been able to, had my family not generously helped me.) I would certainly have been considered "low functioning" were such labels routinely applied to Neurotypicals. This thinking is absurd and infuriating.
Not only should Autistic Adults be able to mentor and serve as role models, they should be encouraged to and then THANKED for wanting to.

I am so GRATEFUL for those who have so generously shared their stories with me, advised me, patiently helped me when I didn't understand something, walked me through why they felt strongly about something that I couldn't "get" right away. Had I not found blogs, like yours, written by Autistic adults who were willing to share their stories I would still be listening to all those so called specialists who don't know shit about Autism, but who talk about it and Autistics as though they do.

Viverrine said...

Where is this happening? I agree with you, BTW, it's ridiculous, I just hadn't heard it. Aren't there quite a few NT millionaires who don't even meet those qualifications?

benedictesymcox said...

Excellent post. I love the fact that most of what you say is utterly independent of autism... Such criteria for role models excludes stay at home parents, many artists, grandparents and most older people... Indeed, many of the people we should be looking to...

Bekki DeAntonio said...

Your blog is wonderful. My son was just diagnosed with autism, so I'm a little naive to alot of this. I love your perspective and can't stand the official party line of "damaged" or "my child was robbed" bullshit. All people are beautiful and all people are ugly at the same time no matter if they're autistic, neurotypical, republican, democrat, black, white, jew or mormon. We're all just people. I love you and I hate you. Don't ever shut up for anyone.

Sarah said...

I have been working less than full-time at my primary job ever since my kids were born, and most of those hours from home. I was able to achieve this schedule (and keep my existing job) only after exhausting negotiations with my employer. I feel like it was a huge victory to win what is essentially an accommodation that allows me to continue doing the work I love -- an accommodation that I expect would appeal to many other autistic workers who would prefer not to be in an office 40 hours a week. I would have LOVED to have a mentor help me figure out the best way to negotiate a modified schedule, because I was the only person who had ever asked for it in my workplace, and I had to go through huge amounts of shit to get it approved. But a mentor who had never worked less than full time might not have had much to offer.

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Kate Mia said...

It is a tough job market, where it is reported that 50% of college graduates under the age of 25 are unemployed and living at home with their parents.

I completely agree with your opinion, but please I am curious as to what organization or individual that understands anything about the difficulties that individuals on the spectrum face in maintaining steady employment, provided an opinion like this, as it is not a logical opinion.

And as far as I can see the discussion ongoing about this issue at this point in time is in regard to Karla Fisher's reports on several websites on her success in mentoring a boy on the spectrum, as also linked here in your blog.

It's going to be much easier for Adult individuals on the spectrum to reach out with interest to parents about mentoring their children on the spectrum, than for parents of children on the spectrum to find adult mentors on the spectrum in the real world, as that potential is limited to the number of individuals on the spectrum and potential interest of those in one's local area, in mentoring a child.

After attending an Aspergers support group in a metro area of close to half a million people, that was attended by about a dozen individuals most of whom were teens, troubled and seeking support, I'm wondering where is one going to find these mentors on the spectrum in one's local area, unless there is an ASAN chapter organized comprised of individuals that might be able to support this effort, which at this point are scattered sparsely across the nation.

If the criteria was set at a college degree with someone working full time in their field, the chances of even finding an interested mentor in their local area seem almost astronomical.

This would be an excellent project for ASAN to direct even if the outreach was extremely limited in scope. And also something that could be collaborated on as a team effort with other advocacy groups that could reach more children in an organized effort, for a worthwhile initiative like this.

openid said...

Agreed - it is strange, particularly the combination of degree and work, as, like you mention, it excludes lots of worthwhile people who just don't happen to work 40 hours a week (heck, the fact I have to work 40 hours a week isn't an indication of my "success" at independence, but rather my dependence upon others to meet my needs. If I was truly independent and successful, I wouldn't need to work).

It also ignores those of us who have been successful in work without a degree. I obtained a degree a bit over a year ago, 15 or so years after I left college. I think it was a good achievement, but at the same time I got the job I have without it (I'll note that the job wanted "Masters Degree or Equivalent Experience" and that I have a B.A., not a Master's, degree).

Part of the lie that we've been fed is that a degree is required for success. The other part is that it guarantees success. But the biggest lie, as you said, is defining success by being the hired servant of another.

BiolArtist said...

I'm having a hard time putting this in words, so I apologize ahead of time if it comes out badly.

I agree with all the comments so far about what a bad idea it is to have ridiculously high and narrow standards for autistic role models. Even if they just mean "role models" that will be celebrities that autistic youth can look up to, versus actual mentors who interact with them, that standard is rubbish.

What I haven't seen explicitly discussed in the comments, though it may be implied, is that we need role models at all different levels of ability. Including role models whose main achievement is living independently in the community with supports, who are happy and fulfilled, despite not having enough spoons/tokens/whatever to even consider "substantial gainful employment" and getting off disability. That is, some people really are too disabled to work or be self-employed. And we should not shame them for it, or provide only role models who can earn a living somehow.

Otherwise, we are implying that people on disability are less than those who can earn a living...and I think that's something we're fighting against, aren't we?

I apologize if people have thought of this already, and I just didn't understand it in their comments.

Into The Grey said...

I don't usually agree with you, but I did agree with what you said here. Good job.

Neurodivergent K said...


That was one of teh things I tried to say and failed at emphasizing. yes. ALL autistics need mentors and role models. ALL abilities. That. yes.

Dixie Redmond said...

This was well written, Kassiane. Especially that many of the point that many of the younger autistics who would benefit from mentoring might not choose to (or be able to) go to college and become a professional.

I read of a former ASD student of mine (decades ago) who ended up working in a class for autistic children. I was soooo happy to read that!