Unstrange Mind

Autistic Author, Artist, Advocate, and Speaker

Barriers and Supports to Autistic Success

dashboard cat

[image description: Fermat the Wonder Cat, a mostly black cat with white on his paws, chest, and lower lip, reclines on the dashboard of a car, looking alertly out the window at ducks that we can’t see. Photo copyright 2018, Maxfield Sparrow]

I’ve been thinking a lot lately about success and failure, how they are measured, and what leads us to achieve our goals. Last week, I recorded a two-part casual chat about why I don’t believe in the concept of willpower and put it on my YouTube Channel. Part OnePart Two. This week I got a mass email from someone  named Benjamin Hardy who wrote a book called “Willpower Doesn’t Work: Discover the Hidden Keys to Success” and in that email he listed four reasons people struggle to achieve their goals.

I found his list of four reasons so intriguing, I wanted to talk about them today, in the context of autism and why so many of us struggle to achieve our goals. It has nothing to do with willpower and everything to do with barriers and supports as you’ll see. The section headers come from Benjamin Hardy. The discussion is my own.

You’re internally conflicted, and haven’t made a committed decision about what you want in life.

I have talked to many Autistic people who struggle with this. One way it gets put is, “they say that we all have a special interest, but I don’t have one. I am not a savant, I’m not good at anything. I guess I will just go nowhere in life because I don’t have any gifts.” Yes, I’ve heard that almost word-for-word from people and it’s devastating to hear. There is so much despair, depression, and desperation in those words. There is probably a good measure of self-loathing mixed in, too.

In part, this thinking comes from how we talk about autism. Look around you at the fictional media, the books, the documentaries. There are typically two types of Autistics portrayed (there are exceptions, of course, and they are delightful. But I also notice them quickly fading into obscurity. Maybe because people don’t know how to think of them in the current set of autism narratives we end up working with?)

One type is the super-achiever. The fictional doctor savant. The amazing artist or designer or Nobel-awarded professor. There is a very good reason that we like to talk about these people, whether fictional or real-life. Autism is a diagnosis and it is typically defined by deficits. Showing people who achieve amazing things — often things that would still be amazing if a neurotypical achieved them — helps counter the public image of autism as something devastating and horrible, a burden on families and society, and so on. The down side of this sort of portrayal is that it primes people to think of Autistic people as only having value if they accomplish amazing things. It commodifies Autistic people in a way that the average person is not. It sets up a lot of pressure to achieve. And it opens the door for despair in both parents of Autistic children who do not seem likely to discover the cure for cancer and Autistic adults who are struggling to find something they can excel at.

Of course the other main depiction we see of Autistic people is the deficit depiction. That is the portrayal that gets funding. It’s the portrayal that miserable people sink into when they feel depressed about their child’s development and future prospects. It’s the portrayal desperate people promote when they are afraid for what will happen to their children after they, the parents, are gone and can no longer protect them. It’s the narrative that gets emphasized when caregivers want to make sure you know just how hard their life is or charitable organizations want you to know just how badly your donations are needed.

The vast majority of Autistics occupy a space in between those two narratives. Those are the narratives of function labels – high functioning and low functioning. I sometimes joke that I am a middle functioning Autistic, but it’s more than just a joke. Function labels are useless and damaging. Most of us are somewhere in between the two extreme narratives and our skills and struggles are not static positions on a number line spectrum. We are not a function label at all. We are individual human beings with individual profiles that cannot be so easily classified with the cardboard cutout portrayals of autism that are so ubiquitous and try to pass for “awareness”.

So some of us will have a fierce passion for writing or geology or medieval history or fluid mechanics or something marketable, but just as many of us will have a fierce passion for license plates or toilets or Harry Potter fandom or Sesame Street or something else not so marketable. And there isn’t a lot of mentoring about how to turn our passions into careers, especially for those with passions that are not so simple to convert to a college major or trade school path. And some types of therapies even teach parents to withhold our passions to use them as rewards for learning other things or simply to prevent us from “obsessing” on something because we don’t look “indistinguishable from our peers” when we’re really excited about the etymology of a word or the shape of a horse’s withers.

Work initiatives for Autistic people are currently aimed at Autistics who have a clear and obvious marketable skill, like computer programming. And even those programs are understaffed and thin on the ground. There’s nearly nothing for an Autistic who wants to work but has no idea what they might be good at. We  need to start paying more attention to the massive “excluded middle” of Autistics who are languishing because our current autism narratives leave no room for people like us to exist.

You aren’t invested enough in yourself, your values, and your goals.

It’s really hard to invest in yourself when you feel worthless.  And it’s really hard to keep feeling worthy when you exist in a world that compares you to diabetes and cancer, that regularly talks about how many millions of dollars you cost to society, that describes you as a burden. I have heard charitable organizations say their goal is a world without autism. I have watched again and again when a parent murders their Autistic child and is treated like a martyr and offered sympathy and understanding.

Words have a real impact on us and the kind of words we hear about ourselves every day are terrible. When April — Autism Awareness Month — rolls around, the constant stream of negativity we’re exposed to gets turned up to a firehose intensity. And it’s no mystery what sort of effect those kinds of words have on us.

Health care does not adequately serve our needs and too many of us languish in depression and suicidal despair. Our lifespans are cut short as a result of stigma and neglect. We are struggling and suffering and unnecessarily dying.  We are murdered by caregivers and law enforcement. Our homeless rates are dramatically higher than the general population’s. Life is pain, yes, but it often seems like Autistics got a double serving of it.

And n the midst of that ongoing crisis — myriad individual crises and a crisis of our entire people — it is not so surprising that we struggle to invest in ourselves and our goals.

Help the Autistic people in your life to believe in themselves. Support them like a springboard supports a diver. Nurture their sense of self-worth. Mentor them in a path pf self-discovery and growth. Help our people. Help each person. The odds are stacked so heavily against us. Don’t add to our burdens; help tear down the walls that stand in our way.

Your environment opposes your goals (most people’s environment is pushing against them, not pulling them forward).

Most people face barriers and environmental resistance, true. But hopefully I’ve helped you to see just how many barriers we are facing. People talk about autism as an “invisible disability” and our barriers seem to be invisible to many people, too. But our barriers are real. No amount of shaming a person or telling them they need to straighten up and fly right is going to remove those barriers we smack up against. So often we can’t even see the barriers ourselves and we are the ones most affected by them.

I was genuinely baffled for most of my life about why I struggled so hard but couldn’t seem to succeed. I would get angry with myself and think I just needed to try harder. I attributed my lack of success to a lack of self-discipline, a deficit of willpower. It was only after learning that I am Autistic and learning about the many barriers disabled people face that I started to understand how systemic my struggles are. Yes, I do have to show up and put in the effort, but much of the weight holding me back comes from society’s judgments and hampering rules, not from my lack of effort, commitment, or drive.

Sure, there have been times in life when I’ve just laid down and given up. But who wouldn’t falter in the face of such overwhelming opposition? Even now, as my life finally seems to be finding a path through the minefields of life, my future is in question. I found my passion (writing, teaching, offering emotional support) and I figured out a way to make all the pieces fit but I might not get to go to grad school for the training and connections I need to make my business plan a reality because I’m held back by old medical debt. Poverty, itself, is a sucking pit of quicksand that keeps people — of all neurologies — needlessly mired within it.

(Quick shameless plug: if you want to help me with that debt so I can go earn my master’s degree, share and donate to my GoFundMe. Thanks.)

If you have been battering yourself against your environment and getting angry with yourself as a result, stop blaming yourself for the ways the world makes things so hard for you. Ask for help. And when you get that leg up and finally break through the barriers, don’t forget to reach back and help pull others over the ramparts. We can storm life as a team. We  need to have one another’s backs.

If you are watching an Autistic person flinging themselves against obstacles, help them get around or over the obstacles. Don’t judge them, even if you feel like their solutions are obvious. They are not wilfully ignoring the solution. Don’t leave someone to wither and die because you think they ought to know better. Sometimes we need help seeing “the obvious”.

You’re trying to do it alone — willpower is an individual battle, and you can’t make positive permanent change by fighting silent battles. The opposite of willpower is connection — you need an environment and the right people to help you change.

It all comes down to support. You can’t live our lives for us, but we need you to help us figure things out. We need people in our lives who are not dragging us down or holding us back but encouraging us forward.

One thing I’ve noticed about my own life with a developmental disability is that I am an incredibly late bloomer. In my 50s I’m finally beginning to tackle things that average people address in their 20s. I sometimes joke that I might get it all together by the time I’m laying on my death bed, but that’s gallows humor. It’s whistling past the graveyard. It’s my own struggle not to be devastated by missing out on so much in life because I wasn’t ready when I was at the proper age and had no mentors to help me through and have no access now because I’m too old.

We are late-ripening fruit and it’s criminal how many of us are left to rot on the vine.

We need a network of supportive people — our own Autistic people and truly supportive friends and family — to help us achieve our goals. We need to reach out for help and we need help in reaching out because asking for assistance is not typically in our wheelhouse. We struggle so much because we are people who need help asking for help.

We need mentorship with money. Not just budgeting it, but negotiating it. I can’t tell you how many Autistic people I’ve talked with about the incredible difficulty of asking for a raise, requesting a fair speaking fee, invoicing clients, or bartering while buying and selling. Being assertive about money is a skill we struggle to learn. The ever-present battle to maintain feelings of self-worth isn’t helping.

We need to be surrounded by people who are celebrating our victories instead of pressuring us to achieve the victories they think we ought to. We need guidance from people who truly understand what it means when we flop limp onto the floor. We need people who help us grow at a healthy pace, not people set on breaking us down so they can rebuild us. Break us down at your own risk. The pieces don’t always go back together once you break us enough.

What I’ve written here seems particularly bleak because I’ve put so much focus into what holds us back from achieving our goals. But I think it’s important to make those barriers visible because we can’t get the support we really need until we and those around us understand what we’re up against. To support us, you need to know what you’re supporting us through.

And I hope you do choose to support us. We are fighting for our lives but we can’t break through alone. We are storming the gates without a key. Unlock some doors for us. Let us in.

1 Comment

  1. Love, love love this! Beautifully articulated, completely relatable, validating, and I appreciated the descriptive language. Thank you!

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