Saturday, August 31, 2019

Forcing Friendships Doesn't Equal Autistic Youth Gaining Social Skills

My son's first friendships were with family.
[Image of a hug between Mu and his adult big sister. His back is to the camera.
His sister is smiling. Posted with the permission of the subjects.
Image by their father, Nuri Cevik.]
Kerima Çevik

"How do I handle my child seeing the children of every new family who moves into the neighborhood surrounding us included in outdoor play knowing he is being excluded from the group?"

I saw another parent posting this question as one of the most frequent questions autism parents ask as their kids become preteens and teenagers, and I cringed a bit. It is a common concern for all families with autistic youth trying to navigate a world where they are often othered and mistreated. My son and I also see them when we hang out on our deck or the backyard in the summer, or on snow days. Kids his age, teenagers, will for the most part either ignore him, ridicule him, or ask to do his respite care to fulfill their community service requirement at school. They never ask him what he wants.

That last bit is particularly anger-inducing. Asking for my son as if you are doing me the favor of walking the family dog is dehumanizing to my son in a dismissive way that reeks of ableism on steroids. These are not the kinds of interactions that will help him build the self-confidence he will need to navigate this world after his father and I are gone. He needs to understand that random people may be ableist and some people are dangerous. He needs to know that some will offer friendship as a ruse to some other end. He must be given the chance to interact enough to grasp the differences between true friendship and all other types of approaches.

My son is not just Autistic. He is the son of a Black woman. Survival social skill building is a requirement of being Black in America. Like code-switching to gain access to better education and employment opportunities, knowing who hates you and what that looks like can keep you alive. In approaching/considering my son’s interactions with others, my racial and ethnic experiences inform my stance on his human rights.

Parts of my childhood were spent in areas where my siblings and I were the only African American children in predominantly white neighborhoods and schools. We were in North Carolina in 1972, where "This is Klan Country" billboards appeared on highways in several parts of the state. We never lived or went to school with the expectation of friendship. We were taught to survive the environments, which were for the most part hostile to us.

My mother was an educator. Her parenting flaws were legion but she had a tendency to rise like a phoenix in times of adversity. When I came home at age twelve with a bruise on my cheek asking what an n-word was, she pulled out an unabridged dictionary and had me look it up. Then she told me in terms that I could understand what this slur was meant to do and why it was untrue. We discussed how I would handle my bullies. She warned that even those in authority might hold biases and turn away while I was being beaten and how to reduce situations ripe for being dragged off and beaten up at school in the future.

My mother said something to me back then that was life-changing. She said people were not required to like me or befriend me. They were required to respect my right to exist, to move in the same space, and to be treated equally under the law.

That is what I want my son to learn. I want him to know, as an Autistic person, that he can choose to befriend someone or not. An autistic young person has the right to have an active and willing agency in the process of deciding who to befriend, what boundaries should be set on such friendships and who they are just not comfortable with. Before any of that can happen, they must understand not to comply with every demand made to them from everyone. They need to understand they have a right to say no to people. And they need to know what kinds of behaviors are abusive and wrong.

But I don't see this happening with parents. The focus is on finding friends, even finding dates when children become teens and adults, without assessment or understanding of their children’s needs, wants, or ability to protect themselves from harm. This goes hand in hand with the belief that friendship by any means necessary with "normal" teens will "rub off." As long as parents force friendships their autistic kids will someday go to sleep at night and wake up magically typical in the morning. Any sign of intolerance from their autistic offspring for whatever the parent views as ideal social interactions with peers is then a behavioral challenge needing to be imposed not only on the disabled child but on peers in the neighborhood. This escalates to pleas to communities to create normalizing events by inducing pity for the autistic child or young adult to elicit a response from the schools, friends, or neighbors.

I hope I never embarrass my son by blasting a social media demand that someone come and befriend him without his consent. He played with other children on playgrounds until he didn't wish to go to them anymore. The noise of a gaggle of young folk filling a sidewalk and refusing to yield to his wheelchair is not particularly pleasant for him. If the non-disabled peers who are his neighbors don't even have the courtesy to yield when needed unless he glares at them, how can I as a parent demand that those same teens befriend him?

Contrary to assertions that these forced experiences are a necessary part of the social skills process, the aggressive demand of parents that other teens interact or befriend their autistic teen can backfire by being off-putting. Negative responses from teens cliques/groups parents wish their autistic teen was part of are NOT teachable moments. My view is that my son is a human being, not a social science project. He doesn't exist to teach his non-disabled peers tolerance.

Two cautionary tales of autistic teens irrevocably harmed by the mistaken parental idea that somehow they had neighborhood friends are the cases of the autistic teen boy in Ohio who was assaulted by five teen males with bodily fluids during a faked ice bucket challenge, and the case of an autistic teen boy who was systematically tortured during snow days and holidays by two teen girls. In both cases, parents spoke of insisting their teens leave with their abusers, even when they showed reluctance to do so.

The parents spoke of being relieved their offspring had made friends with typical neighborhood peers. They had no idea their children were being victimized by their "friends." The need for the parents to want their children to have friends in order to make parents feel better overrode possible red flags about these relationships they might have spotted immediately otherwise.

In contrast, every person who has genuinely befriended my son has come directly to him, not me, and extended their hand or signed to him or asked him if he would like to sit with them. They made it clear to my son that they wanted his friendship and their intent was transparent. And yes, they knew he was a nonverbal autistic. They only asked how he communicated, respected boundaries, and made an effort to find activities that allowed him to see us and understand he could return to us anytime he wished.

My point is simple. We parents shouldn't push friendships on our autistic children because we think they need to have them to reach a goal of being indistinguishable from their typical peers. We shouldn’t presume their incompetence at acquiring friends or berate them for not having any or enough friends. We should not create or force participation in events requiring typical partners and then send social media lamentation that our kid is autistic and has no friends when things don't go well. What parents do by this behavior is to broadcast across a global platform that they have a vulnerable disabled person who is friendless. They broadcast that they are willing to force their autistic loved one to comply with anyone who presents themselves as a potential friend to them. This destroys our young people’s self-worth, reinforces the belief that they must comply with everyone’s demands, and leaves them with a sense of helplessness and lack of agency in their own lives.

Look at what your autistic offspring like, what they want, and how they navigate the world first. Consider what would work for them. Then sit with them and however they communicate with you, explain consent and boundaries. Only when parents are certain their autistic teens want friendship facilitation and understand boundaries and consent should friendship facilitation happen with the active agency of the autistic teen. Otherwise, this is about us, not them.

P.S. Friendship facilitation does not mean broadcasting your teen's lack of friends online or trying to gaslight other teens into taking them to events like homecoming dances, proms, or birthday parties. It means looking for meetups and events that will be accessible to your autistic teen, asking them if they want to participate, and allowing them to leave if and when they wish.

This could save our children from irreparable trauma.



A version of this article was previously published at The Autism Wars.

Thursday, August 29, 2019

Autistic Burnout: An Interview With Researcher Dora Raymaker

Dora Raymaker is a researcher, writer, and artist based in Portland, Oregon. She is co-director of the Academic Autism Spectrum Partnership In Research and Education (AASPIRE) with Christina Nicolaidis. AASPIRE is currently running a pilot study on autistic burnout and suicidal behavior. Autistic people have often talked about burnout, and it emerged as a major theme in their previous study on autism and skilled employment, but up to now, it has received limited attention from researchers.

Fergus Murray interviewed Dora for Thinking Person's Guide to Autism.

Photo courtesy Dora Raymaker
[image: Dora Raymaker, a white person with
curly shoulder-length red hair with one teal
lock, glasses, and a steady gaze.]
FM: Could you summarise what autistic burnout means to you?

DR: The question evokes for me the impacts of autistic burnout on my own life, like "it means feeling my abilities and successes slip away and being powerless to stop it..."

But I think it is more asking, "how would you define autistic burnout?" I think that's an important frame for the rest of the conversation. We're still a finalized-analysis away from coming up with a definition grounded in research, but a fair start at an operational definition might be, "A state of pervasive exhaustion, loss of function, increase in autistic traits, and withdrawal from life that results from continuously expending more resources than one has coping with activities and environments ill-suited to one's abilities and needs." In other words, autistic burnout is the result of being asked to continuously do more than one is capable of without sufficient means for recovery.

FM: There has so far been very little research on autistic burnout, although it is something autistic people have been talking about for a long time. Why do you suppose that is?

DR: Autism research, until fairly recently, has been mostly directed by non-autistic researchers, professionals, and family members whose priorities may be different from, or not fully inclusive of, the priorities of autistic people. Add on top of that a still-pervasive medical model of autism in the research world (disability as a disease to be cured, rather than disability as a divergence to be supported) which makes it even harder to get through the barriers between what we've been talking about wanting and what autism research is actually examining. This is a complicated topic I could probably spend the whole interview on, so I'll stop my geekery about it there, LOL.

Anyway, I'm hopeful that we'll have more research about autistic burnout (possibly disability burnout?) in the future. Autistic people have more voice in research than we used to, from the policy level to the participant level. Also I'm anticipating the surge of work into connected topics, such as camouflaging and mental health, will bring autistic burnout more into the awareness of the research community.

FM: How do you see the relationships between burnout and other experiences often reported by autistic people—meltdowns, shutdowns, sensory overwhelm, and catatonia?

DR: These other experiences are distinct states from burnout, but people report experiencing them far more often when also in a state of burnout. If we consider autistic burnout as a reduction in resources to cope with activities and environments that were already difficult—including by camouflaging and all the negative consequences of that—then it makes sense that a person would be left with less ability to tune out sensory stimulus, breathe through their trauma-reaction, or otherwise avoid the triggers for these other states. Nearly everyone we've spoken with in our research cited increased instances of these experiences as a consequence of the burnout.

FM: Have you been able to show what some effective strategies for coping with or avoiding burnout might look like?

DR: We asked people in our interviews what strategies helped them avoid or recover from burnout. We also looked at social media, where people have been sharing strategies. The community has also been compiling this information, and there are some good resources out there, like this guide from Autistic Women and Nonbinary Network (AWN). I recently did a talk at Seattle Children's Hospital on the research, and the slides from that talk also list a number of the strategies. You can get the slides here, and the talk should be available on YouTube at some point. Until then, it was recorded on Facebook, and you can view it there.

The tl;dr version: being accepted for who you are as an autistic person and supported by others, being able to act autistic and do things that fuel you (like engage in special interests), taking time off, and having a reduction in expectations to do things in the same way as non-autistic people are some of the primary things that help.

FM: Many autistic adults report that they only realised they were autistic (or only received professional help) after experiencing burnout. Some may have talked to specialists before this, and been denied a diagnosis because they were not seen as sufficiently impaired. Do you think it might help some people to avoid burnout, if it was easier to be formally identified as autistic without insisting that someone's autism must 'limit or impair everyday functioning'?

DR: Yes, absolutely. Even just realizing that you're probably diagnosable could be helpful, because it gives you access to community wisdom, and the strategies people use.

However, if the dynamic of autistic burnout really is related to spending more resources coping than one has, I'm not sure the real leverage in avoiding burnout resides with the autistic person alone. Especially because a number of the strategies people have to avoid or recover from burnout involve being able to act more autistic, being accepted as autistic, and getting support and accommodations--all things that require the cooperation of others. So we need to also be looking at ways to make neurodivergence more accepted and less stigmatizing, as well as ways for services to become more inclusive of supporting autistic people who appear to be "functioning well." Knowing you're on the spectrum, alone, isn't, in my opinion, going to fix this.

FM: Some have suggested parallels between autistic burnout and Chronic Fatigue Syndrome. Do you think this is likely to be a fruitful connection to explore in future research?

DR: I'm not a clinician and don't have interest in clinical research. However, there are clinicians like Christina on my research team. Her impression from descriptions of autistic burnout are that it's likely a different thing from CFS (although one could certainly be experiencing both), and that addressing autistic burnout directly is probably going to help more people than looking for a possible relationship between it and CFS. That said, it could be research for someone else with interest in that area to explore.

FM: You’ve completed the first stage of your study, interviewing ten autistic people about their experiences of burnout. Did any surprising themes emerge in these interviews?

DR: Since many of the people on our research team have been part of the Autistic community for years where autistic burnout is frequently discussed, I’m not sure that there were any particularly surprising themes to us. One of the themes that might be most surprising to the general public is that some things they might think are good for autistic people—learning to emulate mainstream social behavior, appearing to “overcome” autistic traits, things like that—may actually be hurtful in the long-term. I think it makes sense if a person thinks about it—if you were asked to pretend to be something you’re not constantly out of fear of negative, possibly life-threatening consequences, and it was very difficult to do, how long could you keep it up? I think it might surprise some people how close autistic burnout is in a lot of ways to professional burnout, or to caregiver burnout, or something else that they might have experienced themselves.

FM: You plan to develop tools to measure burnout in the second part of your study. How might you go about measuring something like that—and what sorts of uses do you foresee for it?

DR: Measurement is a whole field of research in itself. This study is using a mixed-methods approach to create a survey. That means first we’re doing this qualitative part to understand what ideas, or “constructs,” might need to go into a survey to measure autistic burnout. We’re putting together the symptoms of burnout that people talked about in their interviews, on the blog posts, in the community to create a draft of that measure. Then we’ll be trying the survey out with a small number of participants. They’ll take the survey, along with some additional surveys, and be able to give some written feedback. We can then run statistics on the results to start validating the measure. We can learn things like, does the survey contain the right constructs? Do the sections of the survey group together well? Is there an expected relationship between scores on the autistic burnout survey and another survey; for example do people with high burnout scores also have low self-efficacy scores (since people in our interviews talked about a loss of self-confidence when in autistic burnout)? These are all parts of validating a measure. Then we refine the measure and test again.

As far as uses, there are many. Two big ones related to the work I’m most interested in are: 1) It can be used to tell if someone is experiencing autistic burnout, which could then change how services or supports relate to that person; 2) If anyone creates an intervention, or a program of some sort, to help prevent or relieve autistic burnout, a measure will be needed to know if the intervention is working; in other words, you need to be able to measure it to know if you have changed it.

FM: What’s next for AASPIRE?

DR: A lot! We have multiple projects, including our ongoing work on issues such as healthcare and employment, and a new branch of AASPIRE starting up in Australia. You can visit to see some of what we’re up to. As far as the burnout research, the next steps after finishing up this study are 1) to publish papers in the academic and clinical literature to start getting the word out, and 2) to apply for new funding to further test the measure and begin exploring further how autistic burnout impacts people’s lives, so that we can start working toward creating an intervention to prevent or relieve it—as well as giving others tools to do the same.