On Autism Awareness Day, Let’s Actually Do Something

From Newsletter:

My son with autism is turning 19 in a couple of weeks; in June, he’ll graduate from high school. I took a month-long break from writing education articles to find a place for a kid who doesn’t fit neatly into a box. Our tentative plan is that he’ll attend the public school’s 18-21 program, where he’ll learn job skills and smooth out his autistic quirks, and then take math and computer classes at the community college in the evening. 

In addition, I’m continuing to work on the government paperwork process. Our lawyer already helped us set up his special needs trust and gain guardianship. I am attending evening workshops to learn how to apply for Social Security and Medicaid, where I’m learning that parents have to manage their disabled child’s programs, training, and support for the rest of of his or her life; it can be a full-time job, they tell me. 

Today is Autism Awareness Day. I don’t really care about inspirational “thoughts and prayers” on Instagram. I just spent two hours on the phone with the Social Security office, so I’m not in the mood for pictures of blue pieces. It would help me and many others more, if you voted for political officials, who have a disability tab on their website. Vote for folks who will make some real changes to improve the lives of people with disabilities and their families.

Theoretically, most people want a better world for disabled people, but individuals aren’t excited about personally making major changes or sacrifices. In political science lingo, this is called a collective action problem. One of the purposes of government is to overcome collective action problems like collecting taxes, providing healthcare for the elderly, and protecting the nation with troops and nukes. So, disability problems can be overcome given the right conditions. With an educated public and smart ideas, we can improve the status quo. 

Changing consciousness and then developing robust programs is a monumental, costly task. Why should we bother? 

Simply put: making these changes is the right thing to do. As we move towards a more compassionate world that considers the rights and needs and past injustices towards minorities and LGBT community, we have to also pay attention to disabled folks. If we want to live in a more fair world, then we have to eliminate the obstacles faced by this community.

There are also practical considerations. If we do not support the disabled community, then women will stop having children. There’s a 15 percent chance that a child will be born with a disability, which might require one parent to give up career aspirations, drastically reduce family income, and require life-long support. Knowing those facts, many women are going to say, “nah.” Given a choice between an exciting, fulfilling, lucrative career and round-the-clock, life-time caretaking, some women might decided that becoming a parent is just too risky. 

If we want women to take that risk of childbearing, then we have to provide them with a certain kind of insurance in case things go wrong in utero. Women need to know that they won’t be forced to shoulder the burden of caretaking entirely on their own, so they will have the same quality of life as other parents. As things stand right now, I might not recommend that any ambitious young woman become a parent. The risks are too high. 

But most importantly, we need to make changes, because everyone benefits from a world where disabled people are treasured. The world is a more stimulating, creative, happy place, when we have a diversity of abilities around us. Some of these folks are vessels for joy, others have a certain magic and creativity. Even the most disabled individual reminds us of our common humanity and takes us away from our hyper-competitive world. 

Currently, society demands achievement that is pursued at all costs. Young people swim in a toxic competitive world, where only the strongest survive. Those who can manage the mental steeple chase of suburban high schools and make it to Harvard become “excellent sheep.” Those who don’t, which is the vast majority of young people, have a lot of anxiety about their future. Instead of living an environment that only works for the .1%, why not structure the world to benefit the 99%. A society that embraces imperfection, rather than achievement, is a better place for everyone. 

By thinking hard about disability issues, it forces us to rethink our very definition of “normal” and to examine our own oddities, quirks, and impairments. By championing the cause of disabled folks, we also give ourselves permission to wave our freak flags and to not mask the very things that make us interesting. 

So, on this Autism Awareness Day, let’s go beyond blue puzzle pieces on an Instagram post. Let’s actually do something. Let’s support political leaders that fund excellent special education system, that put less demands on parents, that create suitable housing and job programs for adults, that reduce the amount of time spent filling out useless paperwork. 

And let’s take the time to treasure the disabled folks in our lives, because it is the system that is broken, not them. My kid is perfect. 

Picture Above and Below: When Ian was three, he could not blow out the candles on his cake. That was part of the autism. He needed a little gust of air from Steve behind him to finish the job. 

16 thoughts on “On Autism Awareness Day, Let’s Actually Do Something

  1. “because everyone benefits from a world where disabled people are treasured.”

    Amen. In the UX/UI certificate that I’m finishing up, I’ve had two courses on accessible design, both of which introduced the social model of disability – something I’ve brushed up against and kind of had a sense of, but hadn’t from my lens of privilege really explored beyond the basic AODA training that’s required here in workplaces in Ontario, plus a bit on the ground with, you know, people, friends, etc.

    The problem is not the disability or difference, it’s the lack of thinking about (and resources for) inclusivity. My team member who has kind of immediately visible autistic quirks is a really large part of the team, and making a better, clearer, less triggering (? not sure that’s the word, but things like making sure the lights aren’t too bright) workplace for that individual, which dovetails with other supports, has only made a better one for the rest of us as well as the kids with autism that we have as students.

    I hadn’t realized as we were doing that over the last 3 years, until the certificate clarified it, that we were simply redesigning some of our processes and environment to be – better, because more people can come in the door and be a part of what we do.


      1. It feels good to do it, but in all honestly – the end result is better for everyone…I wish it was more prevalent for us all to realize that whatever we build to help/protect/support people pays off for everyone, big time.

        I’m completing my course in Accessible Design right now and it’s struck me that the AODA and other legislation helps with certain things and not at all with others…and even that is often under attack. We have a ways to go.


  2. A friend of my sister’s, and two other women, have a patient advocate business. They focus on elder care and disabled adults. Mostly helping people navigate bureaucracies and helping file paperwork for becoming their parents conservators or arranging adult foster care for an adult child with Downs syndrome. Finding a place for a parent with dementia and getting Medicaid qualified etc.

    They are states away or I would pass on her business contact info, but similar companies are in my area. I was able to connect a friend to one and they helped with getting his insurance to pay for certain treatments by knowing how to fill out the paperwork.

    You might try to find such a firm. They could then make the phone calls to SS, could advise on things to b included in a trust plan and help you find the programs aimed at kids like Ian. Often, state programs exist but aren’t well known and seem to show up in odd agencies rather than health and human services.

    It doesn’t solve the bigger problem, but it might make your life much easier.


    1. Yeah. I’m slowly learning that there’s the regular way of dealing with these things and the rich person way of dealing with things. We’ve already spent a butt load of money this year for an educational evaluation from Yale and a lawyer for consultation and guardianship. We’re already in the 10K range. I was hoping to not spend even more money, but I think it’s going to happen. Sigh. A friend hired her lawyer to take care of the Medicaid and social security paperwork. I might do that, too. I think I have a plan for Ian, but if it doesn’t work out, I’m going to have to hire an educational consultant, too. And then a lawyer again to sue the district to pay for a private program.


      1. A while back, my institution was looking to build course offerings out starting from our ABA and law
        school programs (side note: I saw some talk on Twitter about ABA, calling it torture and dismissing Autism Speaks; I don’t know much about that, so need to read more). Based on what I’ve seen, both from reading here and my limited personal experience (my cousin is severely autistic, so my aunt went through this a few years back, and I have a relative who worked as a nurse in a supportive work program for adults with cognitive differences), I strongly argued for creating a program that would essentially prepare people to be consultants for the transition to adulthood. I wasn’t successful, but it seems to me there’s a huge need for this.


      2. Shannon said, ” (side note: I saw some talk on Twitter about ABA, calling it torture and dismissing Autism Speaks; I don’t know much about that, so need to read more).”

        Autism Speaks is bad news.

        With regard to ABA: I’m not an expert, but it creates teens and adults who are well-enough integrated into mainstream life to complain about ABA.


      3. I know the Autism Speaks controversies from the neurodiverse movement (also overlapping with the anti-ABA crowd, seen as a parent based organization that seeks to cure autism and aims for assimilation not accommodation), but am interested in why Amy P thinks Autism Speaks is bad.


      4. bj said, “I know the Autism Speaks controversies from the neurodiverse movement (also overlapping with the anti-ABA crowd, seen as a parent based organization that seeks to cure autism and aims for assimilation not accommodation), but am interested in why Amy P thinks Autism Speaks is bad.”

        Again, not an expert, but I’ve seen a lot of people who are more plugged in than me complain about scare tactics, excessive focus on “awareness,” the lack of representation of autistic people, the habit of talking as if autism was somehow separate from and extraneous to the child’s personality, unwillingness to accept difference, etc. It looks like they’ve cleaned up their act about vaccines, but they have had anti-vaxx issues in the past:


        Here’s an old Autism Speaks ad that may give you an idea why a lot of people hate their stuff:

        The second half isn’t that bad, but the first half is awful.

        There is an inherent tension between accepting children/people and trying to fix them, but I think I’d resolve the tension by saying that we try to help kids and people become the best possible, most functional version of themselves….which is still going to be an autistic person.


      5. I don’t know what Autism Speaks has been up to lately.

        It’s quite possible that they’re better than they used to be.


  3. Navigating the bureaucracy does seem like it could be worth paying for if the service exists. I also know someone who helps families with elder care decisions and someone who helps arrange custom cafeteria education services for quirky/bright/2E students.

    I’ve been watching with a little bit of envy as you have been fixing up your house (even dealing with the basement disaster) because I am really bad at getting those things done. Right now, most of the electrical outlets in our kitchen don’t work because a fuse has disintegrated and the entire fuse box needs to be replaced, and, if we’re going to do that we should replace the low voltage lights in the kitchen, and if we’re going to do that, we should renovate the kitchen, . . . . And, so nothing gets done. A friend who is starting out in interior design said she might be able to help, and we’re going to talk about whether paying to have someone do those things for me (I need psychological support, too) will work, economically. (BTW, I am not comparing fixing ones house to planning for a child’s future — the comparison is paying someone to help you do something that other people can do for themselves).

    I absolutely think that there should be a market for managing the transition to adulthood for children, though potentially you would be hard-pressed to find someone who could add value to your own skills.


  4. I am also interested in the political question. Jenn talks about a personal/business way she has been part of the accommodation/access that makes things better for people with disabilities.

    “With an educated public and smart ideas, we can improve the status quo.

    Changing consciousness and then developing robust programs is a monumental, costly task. Why should we bother? ”

    I don’t have to be convinced that we should bother. However, I do not know what robust programs would improve the status quo.

    I have a vague belief that more generosity and less gate keeping would make a real difference. But I don’t know what those programs would look like. I am comfortable with some going to the the less “needy” and to see some degree of waste, But, I do worry about programs that simply suck money from taxes and government to rent seeking entities that do not provide the promised service (there’s articles talking about educational entities taking advantage of veterans with educational dollars, right now, as an example).


    1. The math in small business is hard. We used part of a Covid-related grant to get an automatic door, something we’ve been trying to qualify for for years.

      On the other hand, developing better staff/team processes, installing lightbulbs with less glare, closing doors to keep noise down…all very doable. I’m lucky in that my boss is super into accommodation (we have a wheelchair-based martial arts curriculum, as an example.)

      What would have helped us professionally would have been a road map, like “when you are renovating, consider these things.”


  5. “I have a vague belief that more generosity and less gate keeping would make a real difference. But I don’t know what those programs would look like.” — Would you buy a book that goes into depth about this? Because that’s what my latest book proposal looks like.


    1. I’ve been thinking about the books I read, and to answer I think I’d need.a bigger picture of the book idea. An example of a book I still think of is Paul Tough’s college book. It profiled the paths of a different college demographic than I generally see. The kids I’ve watched are intensely academic and have a lot of resources. So I learned something about college beyond that isolated hothouse. And the book helps me think about policy. But that book, though it was very story based, was not personal.

      Susan Senator has a book about her high support autistic son’s transition to independent supported living in adulthood. I haven’t read that one because it feels a bit too personal — not connecting to policy on a bigger scale.

      (And, I would buy your book because as a long time reader I’d want to support your path, but, I don’t think that’s what you were asking).


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