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The Balancing Act of Advocacy

By Rachel

Please note: I’ve tried to make this clear, but please assume that when I talk about parents, caretakers, and other professionals I specifically mean those who are not also on the spectrum.

For some time now, I’ve been working as an autistic self-advocate. That’s even what it says on my LinkedIn profile. It’s not exactly a job that offers a steady paycheck or even a job you could live paycheck to paycheck on. Maybe if you were committed to being some sort of advocacy social media influencer… but I’m not there yet. It’s a gig job if there ever was one; speaking on panels, consulting on projects, writing for this blog, it’s a little bit of everything.

Still, it’s been nice to get paid to do work I find meaningful, and it’s been a good way to keep busy as I try to piece together my future career plans (I’ll let you know when that happens).

One of the organizations I work with recently had me look at a new resource page they’re hoping to add to their site. The language they used stood out to me instantly. There was so much focus on the idea of “treatment” even though the focus of this page hadn’t automatically been “info on autism treatment”. I pointed out this was a problem, as I know many on the spectrum feel uncomfortable or take issue with such a focus on “treating” autism. After all, what does that even mean? Minimizing symptoms? Learning how to mask? Finding better accommodation strategies?

As I’ve turned to the issue of how to improve their wording, my mind keeps coming back to the question of why they automatically focused on this. The page’s goal was actually to share information about autism research. Yet they had gravitated so much towards this specific topic of research. What about the gender disparity in autism diagnosis? What about the increased likelihood of those on the spectrum identifying as genderqueer? There is so much more to learn about this disability other than just the “treatment” of it.

It was while thinking about how alienating this focus on treatment would be for many other adults on the spectrum that I realized what was going on. They hadn’t written this page with autistic adults in mind, not exactly. They’d written it with their most common audience in mind. And that was parents with children on the spectrum.

It’s a common issue I see with the engagement numbers of autism advocacy groups. Most of the people attending the conferences or workshops, signing up for events, organizing support groups, serving on their committees, looking through their resources, and probably even reading this blog, are not adults on the spectrum. They are neurotypical family members (often parents), caretakers, and professionals working with those on the spectrum.

I couldn’t point you to the actual reason why, but I have theories. My thought is that maybe adults and teens on the spectrum simply look for others with autism on social media, connecting and finding support with them. The #actuallyautsitic online community springs to mind. Parents and caretakers, on the other hand, are probably drawn to more “official” websites and organizations when looking for information on autism. The result is that I admit I was also unaware of most of these advocacy organizations until I started working as a self-advocate. And even now while on social media I rarely see others on the spectrum talking about these organizations. Not unless they already work closely with them like me, or if one such organization gets involved in a particularly hot-button issue. For many of my peers on the spectrum, these advocacy groups simply aren’t on their radar.

Or even worse, these groups don’t have their respect. Why would that be? Well, let me get back to that in a moment. For now, put a pin in that thought.

Parents are often heavily involved in these organizations as well, and thus also tend to steer resources towards their own interests. I don’t want to say this as though it’s automatically a bad thing, since it’s only natural. But it begins to create a feedback loop where parents are the main audience, so they get involved which means their interests get considered first which means future resources tend to appeal to parents which draws in more parents. And then these organizations look at their numbers and find that few autistic people themselves seem to have knowledge of or interest in the very advocacy groups that are supposed to exist for their benefit.

Ok, but how do the parents and family members getting involved cause a problem? These organizations also exist to help them too. But, I think that can sometimes be the problem.

This is a difficult idea I’ve had trouble voicing because so many of the people I work with are parents and family members. To be blunt, I think we need to reckon with the fact that those on the spectrum and their neurotypical family members are two different groups with different and sometimes conflicting needs. Trying to prioritize both at once almost inevitably leaves one of them underserved or alienated.

I’m aware that this isn’t a black-and-white issue. There are a lot of good reasons to provide support and resources to parents and other family members of autistic people. They are often our most stable source of support. My parents have been that for me. Not to mention raising an autistic child is hard, and so is being the neurotypical sibling who may be left to fend for themselves because another sibling needs their parent’s time and attention more. I would never seek to downplay those struggles. Plus, not every autistic person can advocate for themselves on their own. Many need their family or a caretaker by their side. Some are not able to advocate for themselves at all, and so their parents or caretakers must be the ones representing their interests. Parents also need to be able to advocate for their children and find resources for them when they’re still young. Further, they will need all the information they can get on how best to care for their autistic children. Even if those children may want to become independent of them as adults.

But I want you to look at this from the perspective of those independent adults who can and want to advocate for themselves. Family can be our strongest and best source of support, but if an autistic person faces abuse, it is highly likely to be from their family as well. And if an autistic person has grown up being treated like a burden, or worse, how will they feel when they check for autistic support groups in their area and are forced to scroll past numerous ones for parents and siblings? If they try to get involved in advocacy work only to find they’ll always need to be mindful of the opinions and feelings of these parents and family members? Always having to share space and resources. I love my parents, I thought I was much more understanding of and sympathetic to the struggles of family members compared to some of my peers, and even I find it frustrating at times. Parents of autistic children have always had available support and information/resources that are exclusively meant for them. For us on the spectrum, that’s still a lot harder to find. So, when parents – even with the best of intentions – continuously involve themselves in autistic spaces… it can breed resentment. There is a reason I have heard the terms “Autism Mom” or “Autism Parent” used pejoratively in autistic spaces, usually to reference a neurotypical parent who makes their child’s autism all about themselves or uses it as an excuse to speak over other autistic people.

I value the work all the parents I know put in, yet I wish they understood that simply their presence at the table will mean some on the spectrum will never be comfortable joining the conversation.

Plus, even what parents want to see in terms of things like resources and language is at odds with the opinions I’ve heard from other adults on the spectrum. I’ve seen multiple parent-led groups that love to use terms like “special abilities”, “differently abled”, and other such cutesy phrases to avoid mentioning disabilities by name. Meanwhile, many disabled adults find such language cringe-worthy at best and outright patronizing/minimizing their struggles at worst. Myself among the latter, just to be transparent about my own bias. Many organizations endorse ABA therapy, which parents often turn to, without a second thought. Yet among autistic adults, to say ABA is a controversial topic would be putting it mildly. While some may see genuine benefits to it, its staunchest opponents consider it nothing sort of abuse.

The treatment-focused research page I mentioned at the start of this article is a perfect example of this. Managing their child’s symptoms is often at the forefront of any parent’s mind, so the person in charge of making it automatically went there too when considering what information people would want to see. While autistic adults would also love to know more about how to manage their symptoms and what research can tell them about that, I know many who would balk at seeing a webpage describe autism almost like a disease being treated. Plus, making the webpage all about that makes it seem as if that’s the only kind of research that matters. What a disheartening experience for those merely hoping to learn more about themselves, only to be faced with a reminder of how much others often seek to change them.

And that’s how these organizations lose the respect of some autistic adults.

It’s funny, the puzzle piece has been such a hot topic lately. Advocacy groups are all so desperate to ditch any symbology that could associate them with the boogeyman that is Autism Speaks. But think, what did Autism Speaks do that’s led it to have such an awful reputation? It did fail to use donations it received to provide any real help to the autistic community, but it was more than that. It did not listen to the actual voices of autistic people. It prioritized the voices of parents who acted as though their autistic children were nothing but burdens, even defending parents that hurt their children. It treated autism like a disease to be literally cured. Even if another organization doesn’t do anything near as bad, even if there are all the good reasons and nuanced arguments in the world for giving parents equal priority and voice in some spaces, do you think every autistic person is going to care enough to figure out the difference? Do you think they’re going to see you talk about “treatment” and never jump to the worst assumption? Using an infinity symbol instead of a puzzle piece won’t change their minds.

I work with these groups; I know they want to hear what everyone on the spectrum has to say. Even if some of it is harsh criticism, I want to believe they’d welcome it. But it has felt impossible for me to say these words. It felt hard for me to even write this post. The fact that parents and other family members are so involved, so entrenched, in these groups creates pressure on me to keep silent in a way I doubt they’re even aware of. I anticipate their defensiveness to these ideas. I can’t even blame them for that, but I’m not eager to brave those waters and have those arguments with every one of them. Not when I’m not even certain of whose side will be taken if I speak up.

I know some other self-advocates don’t feel this way. But my point is that if I feel this way, others do. Some must feel even worse, and will never bother to come to the table because they feel sides have already been chosen.

Is there a simple solution to this? Of course there isn’t. To some on the spectrum only the opinions of autistic people belong at the table, and to do anything else makes you as bad as Autism Speaks. I’ve always known it’s not that simple, but I also don’t want to see groups that strive to help autistic people instead keep inadvertently alienating many of them. I didn’t write this with any grand solution, only to hopefully draw attention to some uncomfortable truths I think need saying.

I’m aware it’s all a delicate balancing act, but the first step to progress will happen once you all acknowledge the balancing act is even there.