On Autism and Social Camouflaging: An Interview With Lily Levy

Lily Levy at INSAR 2018
[image: Lily Levy, a white British woman,
presenting a poster at an autism conference.]

INSAR 2019, the International Meeting For Autism Research, starts in three days. Before we begin our coverage, we'd like to emphasize research and themes from last year's conference INSAR 2018, in Rotterdam—so we can proceed with a grounded sense of how the two conference's priorities compare and contrast, especially in terms of research that affects autistic people's quality of life (QoL).

A consistent QoL theme of INSAR 2018 was autistic camouflaging, also known as "masking" or "passing." We spoke with Lily Levy, who led the INSAR 2018 presentation For Better or for Worse? Social Camouflaging, Mental Health and Wellbeing in Autistic Adults. 

Content note: Discussion of suidicality, bullying, and trauma.

Shannon Rosa of TPGA: I’m at INSAR 2018 with Lily Levy, whose group presented the poster on Social Camouflaging, Mental Health and Wellbeing in Autistic Adults. Could you tell us more about the university that you’re at, and the team you’re working with?

Lily Levy: Yes, so I feel like a bit of an anomaly actually. I’m here as a bit of a weird outsider. This work that we  did on masking—well, camouflaging is the term that we’re broadly using for it—was done last year while I was an MSc student at UCL [University College London]. My supervisor is Dr. Will Mandy.

I was doing lots of work with Will and his wonderful PhD student, Laura Hull, who I think has got about one more year to go with her PhD. That was for my Master’s. I still speak to them a lot and am doing lots of work with them, My day-job is back in the National Health Service where I coordinate an autism assessment clinic for young people, between 5 and 13, without intellectual disability. And I’m part of the multidisciplinary team doing diagnostic assessments there.

As an assistant psychologist. I’m a member of the multi-disciplinary team conducting assessments. I do lots of work coordinating the clinic, [managing the waiting list, and contributing to the strategic  development [of the clinic], [for example] how we involve stakeholders in how we run the clinic and the work that we do.

TPGA: So how did you get involved with the masking study?

Levy: As part of our Master’s we all have to do a thesis and they advertise lots of topics online. I was sitting in the computer cluster with a few other people and we all saw Will’s study simultaneously and we all said, “I want to do that!” I’d worked in child and adolescent mental health services previously before my Master’s, and then a bit of research into child development and mental health, I’d done lots of work with autistic young women and it was something that really interested me.

And I think, clinically, most people have a case that’s kind of locked in their mind that provokes them to want to do certain pieces of work, and for me it was this young woman who came to us with an anxiety disorder  where we should have put her forward for an autism assessment. It would have been helpful for her, I think, and she would have got a diagnosis. But I was very young, I was 21 or 22, very junior on the team. I was pushing for it and senior members of the team were saying, “no”.

TPGA: I’m making a face.

Levy: An appropriate one. And so that, for me, has always been logged in my mind as one of those things where I think, “oh! I wish I’d done that differently!” I feel like a lot of the time I use that as motivation.

TPGA: So you actually want to get to the people who need the services but aren’t necessarily being identified?

Levy: For sure.

TPGA: We’re hearing about those situations a lot, and I’m sure you’ve seen it firsthand a lot. It seems like there’s almost a generation of women who missed out on diagnoses because of historical theories about the causes and underlying mechanisms in autism.

Levy: Yeah. And I think we haven’t done a good enough job at backtracking on that.

TPGA: If you were given free rein in terms of this backtracking, what would you like to see happen?

[much laughter among both women]

Levy: There’s been loads of incredible work that’s been done but I do think that we have done—for me this is a feminist issue—we have done autistic women a disservice, especially autistic women in their middle age [who may have been missed]. We have not done a good enough job at all,  in including women in autism research. The fact that we’re still sitting here at this conference and seeing studies with all-male samples makes me so irritated. It is just inexcusable. And disseminating this research, I think, in terms of the science communication, we’ve done a poor job at that because it’s taken an incredibly long time [for this research] to filter down into practice, still.

And then on a practice level we have a responsibility. I look around at my clinic where we have very complex, very interesting discussions about what it means to have a female autism phenotype. I think it’s not surprising that we’re able to have these conversations because we’re a team made up of women. And we are really struggling to help referrers understand—at the grassroots level, this is about families and it’s about referrers understanding that autism looks very different in different people, and making the referrals for these young people in the first place so they can have assessments. Because, generally speaking, when people get to the stage of having assessments, you would expect—you would hope—that that team is specialist enough to be making those nuanced decisions about, “well, actually, she’s just coping or camouflaging really well. But there’s a huge amount going on underneath and we need to be astute enough to see that and recognize what she’s telling us.”

TPGA: Okay. That’s interesting. How did you recruit people for a masking study?

Levy: We did a lot of work with ARC [Autism Research Centre] in Cambridge. Paula Smith, one of the co-authors of the study, did an incredible amount of work because she manages the Cambridge Autism Research Database, and helped us massively by recruiting participants from that. Then there was a large group of us using the same sample for different pieces of research, all centered mostly around camouflaging. Laura Hull was doing lots of the recruitment for that and we were all kind of pushing it on social media and recruiting from different pockets. I think it went out through the BPS Research Digest and through the Asperger/Autism Network (AANE). Lots of different places.

TPGA: How did you find people? What kind of language did you use to describe the people that you wanted?

Levy: We just said, “are you an autistic adult who is…” I’m not sure if we used functioning language or not, but ‘are you able to read,’ essentially, was the requirement, plus a diagnosis of autism. “Are you over 18 and would you like to fill out a questionnaire to help us with some research.” I think it was on "social behaviors," that’s how we couched it.

TPGA: So the data that emerged from that came from the cohort that you had recruited, rather than recruiting specifically for camouflaging?

Levy: Absolutely. A lot of the work on camouflaging that’s been done so far is qualitative, which is one of the reasons why I love it as a research area—it’s literally come from the words of autistic people. I think that’s one of the reasons why, in all of the areas of autism research that I’ve looked at and been part of, it feels like it’s the most genuinely respectful. We’re learning from the experiences of autistic people, instead of imposing this top down research driven, like, “now we’re going to look at your genes.”

TPGA: I don’t know if you saw the INSAR 2018 op-ed I wrote for Spectrum, before the conference began?

Levy: No.

TPGA: It was basically about how this conference, specifically, has become much more autistic-informed. I would say that I was optimistic coming in, but it’s been even more intense and welcome than I had expected. I do wonder how much of that has to do with the proximity to the UK because, having gone to conferences in the UK and the United States, the UK ones were always leaps and bounds ahead, in terms of having autistic keynote speakers and being autistic-informed and autistic-led.

And then at this year's INSAR stakeholder luncheon we had John Spiers from the UK autism organization Autistica, and one thing he was mentioned that really impressed me was how Autistica was doing what you were talking about, how the direction of their research was autistic-informed. Autistic didn't merely ask, “well, what should we study?” They said, “let’s ask people what they want studied.” And then they don’t only want to do studies that with the goal of “let’s study this thing and find out what happens.” They want to study something and then come up with next steps. Which makes me wonder, did your study come up with any kind of actionable items?

Levy: So the findings of our study were related to camouflaging as measured by the Camouflaging Autistic Traits Questionnaire (CAT-Q) which Laura Hull has been developing. We also looked at objective-ish indicators of outcome in a really crude sense, like education status and relationship status.

And then we looked at measures of psychopathology, or mental health. Measures of depression, social anxiety, and generalized anxiety, and a measure of wellbeing, because we wanted to unpick a bit some of the stuff that we’re beginning to see emerging from the qualitative research. Generally most of this work has been done with women thus far, and they were saying that, “yes, we think that sometimes camouflaging is helpful for us because it allows us to pass essentially as neurotypical, but it’s exhausting. It takes a massive toll. It takes a huge cognitive load. It saps your cognitive processes. And it makes me feel like a fraud because I feel like I’m pretending all the time.” So we sometimes naïvely think, from a neurotypical perspective, that camouflaging is a super-positive thing. “Oh, we can make autistic people behave like neurotypical people.”

TPGA: And that’s why we’ve had ABA for so long.

Levy: Right. Exactly. And that’s one of the things that was lodged in my mind, actually. I don’t know enough about ABA to be a vehement critic of it but I do know what autistic people that I work with and who I’m friends with tell me. And that’s, generally speaking, what I’m going to go by.

But also, we think we do social communication interventions with children all the time and we present these strategies that we’re teaching them, you know, “you make eye contact like this” as universally helpful. Yet we know what happens in the brain for some autistic people when we force them to make eye contact. For some, it’s literally painful. So I was thinking about these interventions that we use and how we present them. What we found in the work that I presented here was that camouflaging score was a pretty good predictor of  higher scores on measures of depression, generalised anxiety and social anxiety.

TPGA: So a high camouflaging score…?

Levy: Yes. The more camouflaging you engaged in, the more likely you were to have a high score on a measure of anxiety, social anxiety, and depression. The [Camouflaging Score] had no impact on wellbeing. That’s not a negative impact; it’s just none. And I think it’s possibly because the measure of wellbeing that we used is not validated on an autistic population. We don’t have many good measures yet for quality of life.

TPGA: What kind of criteria did you use for well being?

Levy: We used a measure called the Warwick-Edinburgh Mental WellBeing Scales which is pretty widely used, but again—like most measures—not validated with autistic people. So I was really excited to hear about the work on quality of life and the World Health Organisation’s Quality of Life Measure (WHOQoL-BREF) that was presented [by David Mason and the researchers from Newcastle University] here, because I think it’s so important. That was the biggest thing that bugged me throughout the whole of this thesis, and I was frantically looking for “what can you tell me about wellbeing, quality of life, and outcomes for autistic adults?” And nearly everything that I was finding was about wellbeing and quality of life for autistic people's families: for their parents, for their siblings, or even for professionals working with them. I thought, this is very strange.

TPGA: Yes, it is.

Levy: I think perhaps the fact that the measure wasn’t validated properly on the population that we were working with and talking to was problematic. That’s something that I would probably change. So it’s not just that there’s no relationship between camouflaging score and wellbeing score, but  also, on those objective indicators of outcome higher camouflaging scores for men or women had no impact on whether or not participants were in relationships or whether they were in work. So you might think you’re much more likely to be in gainful full-time employment or in a romantic relationship if you can more easily pass as neurotypical. But actually, in our sample, which was pretty big—315 people—we didn’t find that.

TPGA: Wow. So there’s no associations to be made there?

Levy: Yet. It’s preliminary. We’d like to do more. But what was really interesting is that the "Suicide and Bullying in ASD" oral session. Sarah Cassidy at Nottingham—this is the first time I’ve seen someone do some similar work [with regard to negative consequences of camouflaging]—presented research that indicated that camouflaging was the best predictor of suicidality in their sample.

TPGA: Oh, hell.

Levy: I know. It hit me in the gut. I just thought, don’t tell me this isn’t important now.

[The suicide and bullying session] was the most powerful series—and everyone knew it would be, I think—there was some other stuff, like general suicidality in the autistic versus the non-autistic population, and it’s something like 17% of all autistic women had made a suicide attempt.

TPGA: And I think you said that it didn’t matter if there was intellectual disability or not—it was a similar rate?

Levy: Yeah, that’s what they said in the oral session. But you could hear people gasping and I looked around the row of the people I was sat with, and I think all of us were slightly fighting back tears because it was so shocking. And it’s stuff that we know and autistic people know but to see it so starkly laid out…

TPGA: This is the third year in a row that Sarah Caassidy has presented on suicide at INSAR. We interviewed her two years ago, when was still on the preliminary part of the study and it just seems like the more she finds out about the reality of autism and suicidality, the more depressing it is.

Levy: That's why I think it’s important to be attached to research institutions and to research groups like the one I was working with at UCL, that work so closely with great autistic researchers and advocates—people like Robyn Steward, for example. You have to have those voices in the work that you’re doing, and somebody to lance it slightly and say, “this is nonsense,” or, “you need to add this up, actually this is what’s important. Your focus is wrong.”

TPGA: Yeah, we just don’t have anything like Autistica in the U.S. We just don’t. We have the Autistic Self Advocacy Network but they work more on policy and resource, not so much on funding and guiding research—even though they have members who sit on the IACC [Interagency Autism Coordinating Committee], which is the autism policy advisory board for the National Institute of Health. But nothing equivalent to Autistica. Just hearing Mr. Spiers describe actually what Autistica does in the UK made me think, “Ah! That’s what we need in the U.S.!”

Levy: Yeah. I think it would be awesome to see similar things springing up—because you can tell there’s an appetite.

TPGA: We do have AASPIRE which has been great in terms of participatory research, specifically in health and well-being, I don’t know if you know of them.

Levy: Yes, they’re awesome

TPGA: Yeah, AASPIRE has been around since 2006, but they’re basically three people as opposed to Autistica which has a budget of two million pounds, they said. Something like that.

Well, is there anything that we didn’t ask you about that you wanted to talk about with regards to your work?

Levy: Not really, I guess. We’re just thinking about how to develop it and where to take it next. We’re thinking about its applications and implications. I’m particularly interested as someone who is a practitioner as well. I do post-diagnostic work with families and with young people. I want to think about how we can get other people to do similar things [discussing camouflaging and its potential impacts with young autistic people who have just had a diagnosis].

There are also lots of amazing different ways of operationalizing camouflaging so we’ve used this questionnaire that Laura has developed, which is great. But there are also other people like Professor Meng-Chaun Lai at the University of Toronto, who use a kind of discrepancy-based approach to camouflaging: Taking the difference between your internal autistic state [for instance on self-report measures of autistic traits] and a kind of more external, behavioural state as measured by the ADOS. And the difference between those two scores indicates the level of camouflaging—which is a really elegant way of doing it.

It would be really great to see if we could do a bit more replication to think about how much this research bears out in terms of the positive and the negative outcomes and affiliations, I guess, of camouflaging in autistic people. It’s really important that we carry on doing that with mixed samples because we haven’t quite teased out what those gender differences are yet at all, and it’s really important that we do.

TPGA: Oh, and just in terms of the gender differentiation, did you have just men and women? Did you have any trans folks in your group? Is there any way to quantify for that?

Levy: There was a very small number of non-binary people, and I couldn’t work out how to factor that in [to the analysis just yet], in terms of power, so I think maybe we could have done a bit more specific recruitment, especially now knowing what I know after the gender talks here. I think it would be really interesting and super important, just based on the numbers, that that’s represented somewhere.

TPGA: Cool. Well, thank you very much for talking with me. I really appreciate it.

Levy: Thank you.

----
Transcription by Max Sparrow

Read More

#AutisticWhileBlack: Diezel Braxton And Becoming Indistinguishable From One's Peers

Kerima Çevik
theautismwars.blogspot.com

The author's idea of what displaying autism positivity looks like

[Image: a Black woman over 50 with braided gray hair wearing

Neurodiversity 3.0 by ThinkGeek, a black T-shirt with a world globe

 design on the upper chest area in the shape of a human brain,

colored in physical map fashion i.e., water is colored light blue

 and land masses green, clouds white, looking to her left

 over bent wire-rimmed glasses in that way that mothers look at

 their children when an outrageous behavior has just ensued.]

There is an article in a paper called The Daily Net, about singer Toni Braxton's 16-year-old son Diezel working as a professional model for the past two years. The article refers to him as "formerly autistic." It goes on to say he has, "fortunately, moved past" autism and is now a celebrity himself.

Apparently, when her son was thirteen, Ms. Braxton was told he no longer met the criteria for autism. According to the article, she goes on to say:

“I am one of the lucky parents. Early diagnosis changes everything. I will tell you this. I will shout it from the rooftops. My son Diezel is off the spectrum. Off the spectrum being autistic.”

I beg to differ. There is no cure for autism.

Autism is a neurological divergence that doesn't just go away. One doesn't "move past" the wiring of a brain that has obvious neurological and physical differences. Calling current interventions for autism "treatments" is a misnomer that confuses parents. These interventions do not cure autism. They suppress visible signs of neurodivergent minds, forcing a type of behavioral code-switching that allows an autistic person to appear to navigate the world around them, such that they blend in with nonautistic peers.

This is not a cure. The price paid when forced training in compliance and the suppression of coping mechanisms is pursued—instead of investigating and addressing the root causes of coping mechanisms and misunderstood behaviors—may later manifest later in "formerly autistic" adults as mental health challenges, and PTSD.

A parental demand that Diezel should not display any sign that he is autistic has been issued for public consumption, from a mother who has no understanding of being autistic—except to view her son's brain as an enemy he must fight, and defeat. Is telling your adult son to hate his own brain, and how it works, a good thing? This sounds more like the very definition of how internalized ableism happens.

Toni Braxton would not tell her son that his melanin and hair are abhorrent things that he must combat and chemically suppress so he can be "indistinguishable from his white peers." I wonder why its okay to tell him to hate the nature of his own neurology? Most of the innovations, discoveries, and creative artistry in this world came from neurodivergent minds. Nina Simone was bipolar, as were many other great musicians. Many creative people are autistic. Presumption of a cure when the symptoms of a divergent mind are no longer apparent deprives neurodivergent individuals of their future rights to critical mental health, and other supports they may need to access going forward.

It is truly harmful to hold up an autistic teen and call him "formerly" autistic. If he has trauma, anxiety, or any future issues, his own mother's insistence that his lifelong disability is gone might lead him to hesitate in seeking help, to feel inadequate, to feel unable to request critical accommodations and supports that might significantly improve the quality of his life—or save it.

Diezel is the son of a celebrity, so his life is at this moment might appear significantly better than that of his African American peers. But this path of using an incorrect term for his becoming indistinguishable from his peers is dangerous to our community, and wrong.

Toni Braxton's type of rhetoric, along with parading her teen son around as inspiration porn, could have other parents exerting increased pressure on their own offspring to be "formerly autistic"—and if those young people have a degree of disability that makes becoming indistinguishable from their peers unrealistic, it could irrevocably harm them.

The author's idea of an autism positive autistic male model. 

With permission, and yes, we have matching Neurodiversity 3.0 

t-shirts. He is wearing his, bought deliberately 

large because the collar would disturb him otherwise.

 The photo matters because it defies professional

assessments of his degree of disability.

 He is facing me while I'm photographing him,

 he's looking right at me, and he's sending a

kiss in my direction. 

[Image of a multiracial teen with curly hair

at a table in a black t-shirt with a

drawing of a human brain

colored to look like a physical map of the world

 with the word Neurodiversity in all caps

 and green lettering beneath it.

A refrigerator can be seen in the background as

can parts of a sitting room behind him. © Kerima Cevik]

The crushing element of structural ableism, which breeds internalized ableism when nurtured by this type of parental gaslighting, may have emotional consequences at a later time in Diezel's life, and that truly concerns me. His mother clearly hates the autism label, and views autism in the same way she views the Lupus diagnosis she carries. I wonder how this has informed his identity and his sense of self-worth? I wonder if Diezel has been assessed for conditions like prosopagnosia, synesthesia, or auditory processing disorders? Has he been tested for Ehlers-Danlos Syndrome (EDS)? These common autism traits and co-occurring conditions are rarely tested for, or addressed, in African American autistic populations.

As African Americans, we are forced to code switch, to suppress African American Vernacular English (AAVE) and cultural differences that make us who we are—unless those differences in language and manner have already been culturally appropriated. Ebonics is still deliberately treated as something less than acceptable. It is still a major issue when natural hair is worn to school, or work. It is still a risk when AAVE is used in traditional work settings, or public spaces. The suppression of Black identity that necessitates code-switching to gain employment perpetuates structural racism. This type of racism has been exposed, deconstructed, and understood to be harmful. We now insist on being ourselves, and this has direct positive effects on the acceptance of our own Black identities. This reduces internalized racism and has created an entirely new generation of young Black activists who are able to continue to fight for the basic human rights we deserve as African Americans.

Toni Braxton's celebrity, and her wrongheaded understanding of autism, have been used for years to muddle the African American community's attitudes about autism. She allowed herself to be used to present autistic brains as things to be eradicated, and this is unacceptable. Her attitude sets up a dangerous mentality that is unsustainable, as you cannot eradicate your child's brain.

Braxton has been vocal and public in her portrayal of autism as a disease to be suppressed and defeated, rather than as a lifelong disability, and this has had a devastating impact on how our people view their own autistic children. We have a disproportionate number of autistic high school graduates who could succeed in college with the understanding that supports exist to help them navigate university life on every college campus. Our community views autism as a mark of shame, an embarrassment, and celebrity parents like Ms. Braxton continue to be instrumental in perpetuating these attitudes of ableism that hold multitudes of autistic youth back, when her intention appears to give our people some sort of hope and inspiration.

It is time to make the harm Braxton is causing clear, and speak up for the sake of so many autistic young adults and teens who live with self-loathing in part because of celebrity parents who inadvertently gaslight them with the attitudes that the things that make a young person autistic must be code switched off, suppressed—and who they really are must be either hidden away, or eradicated.

The average life expectancy of an autistic person is 36. I would argue that what makes navigating this world as an autistic person so risky is not just being autistic; it is the way every layer of society bakes ableism into the structure of autistic lives, such that from childhood to adolescence it becomes internalized, and increases risks of harm. We parents have to stop contributing to this cycle of loathing and alienation with misinformation, myths, and false narratives. It's time we understand the impact that our words and actions have on our children, and on the entire autism community.

I can't keep Toni Braxton from misinforming the public about her opinions on autism or her son. I can't keep her from continuing to speak about him without him, although he is now a celebrity in his own right and supposedly capable of speaking for himself. But what I can do is point out what is wrong about her behavior, and the damage it is doing. What we can all do is recognize what Braxton is doing, and not pave the road to autism hell by allowing ourselves to be led by celebrity or personalities. We need to seek peer-reviewed factual knowledge of what autism is, and understand how we can facilitate a better life for our children, by arming them with accurate, empowering facts.

Read More

I'm Not Just Socially Awkward

Photo courtesy the author
[image: Blurry photo of a pink ride-on bouncy balloon with
an animal face and two "horns" for handles. Overlaid white text
reads, "I'm not just socially awkward." Smaller white text in the
lower right corner reads, "@oufoxgloved"
and "Autnot.Wordpress.com"]

Rhi Lloyd-Williams
autistrhi.com

When I tell people I’m autistic, it usually goes one of two ways; either they can’t make me fit into their idea of what autism is and completely reject it, or they mark me down as “socially awkward” and leave it there.

Autism explains my lack of constant contact, it explains my monologuing about things that interest me, it explains why on social occasions I move around a room like a loose cog in a machine—catching on things, getting stuck in places, jarring against this and that before being knocked into a corner and staying there.

Those are the things about me that you can see. What you can’t see are the other bits; my problems with Executive Function, my never-ending battle with literalness, my lip-reading over auditory-processing, my sensory issues, my affinity with numbers and disassociation with names, and on and on and on.

When people classify me as “socially awkward” they expect too much from me. They’re surprised when I find some things hard. I’m not telling you that I can’t make a shopping list because it’s boring and takes time, I’m telling you that it’s incredibly hard. There are too many variables, I have to hold them all in my head, I can’t, it gets too big. I falter and have to start again, but then the same thing happens. I cannot juggle the thoughts needed like that. I cannot think in a linear way, I have to include all the forks going off in different directions.

You may think in straight lines, but my thoughts are like lightning bolts. They flash brightly, sparking off in every direction, and by the time the thunder rumbles, I have lost the central bolt and am caught in how my hairs all stand on end.

I am not socially awkward, I am socially different. Autism isn’t about not making connections, it’s about making different ones.

I am built to logicise and problem-solve, and this means I am brilliant at certain aspects of thinking, but terrible at things that other people take for granted as "easy."

When I say I find something hard, please don’t tell me how easy it is. Please don’t tell me I just have to do it like this or like that. It will never be easy for me. It will always take time and energy that could be spent elsewhere. If you found quadratic equations hard, I wouldn’t tell you how easy they are. I wouldn’t tell you to just do this or just do that. I accept that although I can explain and help you get to the answer, this may be something you will always need support with.

I am not socially awkward and lazy or incompetent. I did not get this autism diagnosis diagnosis because of shyness. I am autistic, with all the joys and pains being human brings. I am creative and imaginative, I am loving and thoughtful, I am good at things and bad at things. The things you find easy may not be the same as the things I find easy, and that is just fine too.

Read More

An Autistic Burnout

Content note: This post discusses suicide and suicidal ideation (thinking about suicide).

Photo © Lee | Flickr/Creative Commons
[image: Photo of end-stage burning match.]

Kieran Rose
www.theautisticadvocate.com

I've struggled massively with writing this.

It's ironic really.

It's taken me six weeks to start writing an article about Autistic Burnout, because I'm going through Autistic Burnout...

If you saw someone going through Autistic Burnout would you be able to recognise it? Would you even know what it means? Would you know what it meant for yourself if you are an Autistic person?

The sad truth is that so many Autistic people, children and adults, go through burnout with zero comprehension of what is happening to them, and with zero support from their friends and families.

If you're a parent reading this, I can confidently say that I bet that no professional, from diagnosis, through any support services you're lucky enough to have been given, will have mentioned Autistic Burnout or explained what it is.  If you're an Autistic person, nobody will have told you about it either, unless you've engaged with the Autistic community.

Autistic Burnout is an integral part of the life of an Autistic person. It affects us pretty much from the moment we're born to the day we die, yet nobody, apart from Autistic people really seem to know about it.

I had some parents come to see me. It was just a chat, their little boy was struggling in school, and they were looking for some advice. Somehow we got onto talking about my own experiences at school, then onto my suicide attempt at fourteen (which I describe in graphic detail in How to hide your Autism and An Autistic Education). My story was horrifying enough to them, I imagine—but I think what horrified them most was what had led me to place in the discussion: They'd never heard of Autistic Burnout.

When I described to them what autistic burnout is, they actually recognised a recent episode where it had occurred with their son. And the more they looked back at his life, the more they started to recognise a pattern; they started to see how life for an Autistic person is really a series of peaks and troughs. They now see how frequently he has been through burnout, and how they had pushed him to keep going through each episode, unwittingly, when he had no way of communicating what was happening to him.

So, what is Autistic Burnout?

Firstly, you may have heard of something called Autistic regression. Autistic regression, which in itself is a horrible name and a terrible descriptor, is often described around the time a child is diagnosed, or as the reason to seek diagnosis.

A parent may describe the child as losing some or all of their verbal communication ability, for any person of any age they may appear more 'typically Autistic.' As a child, milestones they had passed—walking, toileting, verbally communicating, may revert back to a pre-milestone position. The name Autistic Regression is completely wrong, though, as it does not take into account that it can be—and is often—temporary, and it is part of the ebb and flow of Autistic life, caused by the impact of society and the environment the person lives in, and it is not a permanent return to a former or less developed state, as many would have you believe.

There are, in my opinion two distinct types of Autistic Burnout that feed into each other.

The first is often termed Social Burnout. This is a frequent occurrence: where just your day, just living, talking to people, being assaulted by senses, exhausts you to the point where you can only collapse in a heap at the end of the day, or at the end of the week, depending on your constitution (remember this won't be identical for everyone, but it certainly will be similar). This can happen at any stage, from infancy through old age.

The bell rings for the end of the school day, the children are filing out of school, so I duck out into the woods and light a cigarette.

I need the noise muted and filtered; the wind does that, carrying the hubbub of the end of day away from me—I'm an expert at this by now, staying downwind of noise. My whole body is tired, lead boots weighing me down, my brain slowed distinctly, reactions are slack.

A day of talking and socialising—Conversations with adults and children, timetabled and spontaneous. Running the conversational scripts in my head to full capacity all day long. 

Surrounded by noise; screaming children in the playground, shouting children, singing children, musical instruments, banging and clashing, the general commotion of the classroom; and over the top, the dumpf-dumpf-dumpf of my heart in my ears and in my chest. 

The strip lights overhead, flickering constantly in pulsing waves, each one shooting through my eyes and down through my body; I can physically feel each pulse humming and vibrating. 

A vast array of colours and patterns on the brightly coloured walls, covered with brightly coloured work. The sun glaring through forty year old, grimy windows, diffracted around the room, while a billion dust particles dance captivatingly, confusing my already overwhelmed eyes. 

And over the top of it?

Masking.

Suppressing my reaction to all of this, the urge to scream and scream and scream till I explode—wanting it all to go away. My face is still, good eye contact made, no matter how much it hurts, being touched constantly, leaving my skin feeling like it has been repeatedly pressed by a molten hot branding iron. 

It's not over yet though. 

Three quarters of an hour of tidying and prep for the next day and it's time to leave. I get a lift with a colleague as the buses are so infrequent, so I have to maintain conversation. My colleague is lovely though and can generally sense somehow when I can't speak, and a ten minute car journey often passes in a vaguely comfortable silence. It's sometimes like a tiny piece of decompression time before i get home. 

When I get home there's nobody there. Sometimes turning the key in the lock is the hardest thing to do, it's so heavy. The weight of the bag on my back pulling down.  My lead boots heavier and heavier. 

I get through the door and drop my bag. I crawl and stumble up the stairs and make it to the bedroom, collapsing on the bed without even the energy to remove my shoes, my eyes are heavy, exhaustion pulling my lids shut. 

Several hours later when Michelle comes home, she finds me and wakes me. I have enough energy to make it through the evening, just. My conversation is muted though, like when someone asks a child what they did at school and they reply with 

"Nothing." 

I want to respond, I want to engage, but I have neither the ability or the energy.
I'm 26 and I've been doing this for as long as I can remember, practically every day the same.  

The days when i can't do it, when I can't collapse in a heap, the worse it is the following day... 

Three years diagnosed and I have no idea what is going on, this is my normal.

Can you imagine this, day in and day out—this is just everyday life, and this was pre-me having children. I've got three children now and they are the light of my life, but how they have impacted my ability to recover day after day is immense. I could no longer collapse—I didn't have the capacity.

The responsibility of having one, then two, then three children led me to have to Mask and suppress even more, fight through and resist the extreme, overwhelming shutdown my brain and body wanted to go into.

This has become a sick joke to me.  When people message me and ask me how I am, my response is:

Image courtesy the author
[image: Graphic of a computer error message: A white rectangle with an
icon representing a "sad" page at the top, followed by dark gray text
reading, "Unable to connect to the proxy server", followed by smaller
underlined gray text representing a link, reading, "Details".]

Autistic Burnout is exactly that;  The shutting down of mind and body.

If you've ever had a problem with a computer and it's had to go into safe mode, that would describe what happens to the brain: it runs on limited function, not all services are available, and its access to the Internet (my Rolodex, as I described in The inside of Autism: The world inside my head) denied and unable to connect. No little white bars to indicate how strong or weak the signal is, because it's just not there.

Physically I often imagine this as the need for hibernation, where the body effectively stops all but the most important functions, the heart rate slows, and breathing distributes evenly and slowly, hovering on the precipice between sleep and death.

Except through this all, you are awake and expected to function, expected to get on and live your life, so you repeatedly go back and do the same things over and over again, put yourself through the exact same scenarios that caused you to feel like this in the first place, rinse and repeat.

Another aspect of this is that Autistic people, for some reason, possibly related to Masking and wanting to fit in, can be incredibly eager to please. Part of that eagerness, especially for those who don't fully fill the Pathological Demand Avoidance profile, is often an inability to say "No" to people.  So we take on more and more, we allow our plates to get fuller and fuller, our anxiety heightens, our sensory processing becomes more difficult to maintain, our Executive Functioning abilities spin out of control and again this attributes to burnout. We often aren't terrific at juggling plates.

Jeanette Purkis, who is an Australian Autistic, an absolutely wonderful writer and a Member of my network organisation, The Autistic Cooperative, has written an excellent piece called "‘Too Nice’: Avoiding the traps of exploitation and manipulation." In it, Jeanette says:

"There is an actual concrete reason that we tend to be taken advantage of and it starts with the difference in communication between autistic people and neurotypical people. Autistic communication is generally on one level. We are honest, up front, and do not often do things like manipulation and deceit. We generally do not lie—although many autistic people are capable of lying if they feel the need—but usually it doesn’t come naturally. 

Neurotypical people (or ‘allistics’ if you prefer) operate differently in how they communicate. Their communication tends to happen on more than one level. It can be seen as the difference between visible light and infrared light. If you can only see visible light then it is hard to imagine what infrared looks like, even if you are aware it exists."

These differences are not visible to an unaware or undiagnosed Autistic person, so it leads not only to the full plate, but offers up the Autistic person to all levels of potential abuse and manipulation through compliance. I could talk right now about Behavioural Therapies such as Applied Behavioural Analysis (ABA) or Positive Support (PBS) and how they take advantage of the Autistic being eager to please and open to manipulation, but I'll save that for another day.

I mentioned in An Autistic Education, about the fallacy of parents repeatedly sending their children into school, making the same mistake over and over again, watching their child crumble before their eyes, yet unable to break the cycle even though they can see what is happening to them: 

You have to go to work, as much as you have to go to school.

Society demands it.

Society demands compliance.

Autistic people are doing the very same thing. We repeat processes constantly which wear us down mentally and physically constantly, each day, without a break. Some undiagnosed people unwittingly develop strategies to cope with this, the Mask again, rearing it's head, but it all catches up eventually.

And all because we're made to think that we have to. 

This is what people do...

Society demands it.

Society demands compliance.

As I mentioned earlier, burnout covers all age groups. Autistic babies suffer Social Burnout as much as children or adults. Babies who do not wish to be touched, babies who are forced into eye contact, babies who are picked up and manhandled, babies who have even less of a filter than Autistic children or adults to block out the overwhelming sensory sensations they are put through.

So, if this is the every day normal for an Autistic person, to one degree or another, from birth to death, what happens after an extended period?

The second type of Autistic Burnout.

You crash, and you keep crashing.

If you imagine everything that I have described above, the shutting down of mind and body, but imagine it occurring over a period of weeks, or months, or even sometimes years.

This is extreme Autistic Burnout. It's usually the result of the day-to-day overwhelm combined with an event or trauma, or typically the weight of life building to a point where the Autistic person has to cease to function.

When I was fourteen, my Autistic Burnout was triggered by a combination of things. I'd reached the end of my tether with school—I just couldn't hack it any more, couldn't hold in the pain it was causing me any more. I was in a constant state of sensory overwhelm; I was isolated, confused and didn't know what was happening.

My Grandfather had recently died too—which was a massively life-changing event for me. 

I've mentioned that touch burns me? 

Well at that point, the only person on the planet who could touch me without it hurting was my Grandfather. Albert Ferguson was the kindest, cuddliest man I have ever known. I remember my eldest sister (who is also Autistic) and I were forever clambering over him, rubbing his shiny bald head, breathing in the smell of his tobacco and 'two fingers' of single malt whiskey. I'd lay there silent in his lap for hours while he'd regale me with regimental details, battalion names, and numbers from his time in Burma during World War II—and days later he'd test me on those details, delighted when I remembered them correctly.

When he died he left a huge gaping cavity in my heart and my mind. 

One of the worst parts was that he was hospitalised for a long time before he died—months—and I was not allowed to see him. I was desperately sad that he'd gone, but I also incredibly aware that now I had nobody to touch or be touched by. I resigned myself to a life of pain at that point, could not conceive that I would ever find anyone else who wouldn't physically hurt me.

So this combination of grief and sadness, along with the overwhelming confusion of not knowing what was 'wrong' with me, why I couldn't really connect with anyone, why people singled me out or played tricks or used me, of what the hell was wrong with me and why I just kept hitting this wall over and over again, was what led me to crash and burn out. My physical body and mind started shutting down. I could feel each system in my body closing off as gravity got heavier than it had ever been. I didn't know what to do, did not understand what was happening to me, and I had no way to communicate this.

It was like a switch had gone off, my verbal ability to convey what was going on in my mind and body was gone.

I did not want to die, I've never wanted to die.

I needed to step out. 

I needed to remove myself from the environment and take myself elsewhere;  I needed to escape.

But the only way I knew how to do that was to die. So I tried.

And what I was feeling was not depression, I know that now. 

Some researchers are starting to listen to Autistic people and are starting to recognise that clinically, Autistic Burnout shares a similar presentation to Depression, but is a completely separate thing. They are seeing how Masking, or Social Camouflaging has a distinctive lead-in to the high autistic suicide rate, and also ties into other mental health issues that are identified—sometimes wrongly—in Autistics, and also how a lack of Autism Acceptance plays a huge part in mental health too.

The lack of distinction between Autistic Burnout and Depression; In fact the lack of recognition of Autistic Burnout at all, outside of the Autistic Community, has caused many problems for Autistic people. Many who have been identified as depressed have been and still are being put in psychiatric units, psychiatric care, drugged and then have developed Mental Health issues—when really what they needed was major sensory withdrawal/stimulation (depending on the person), acceptance, understanding and rest.

I'd been taken to the doctor multiple times by my Mum, and had been on various types of antidepressants from the age of twelve, which, looking back, is actually quite disturbing—but probably indicative of a time where so little publicly and medically was known about mental health, let alone Autism.

I cannot emphasise enough how important it is to make the distinction that Autistic Burnout is a separate thing from Depression and how important it is that Autistic Burnout starts being recognised and addressed in Society.

None of this is meant to imply that an Autistic person cannot be depressed—that is not the case at all.

Along with the things that cause anybody to be depressed, prolonged burnout can definitely lead to a depressive state, as indeed can a lack of Acceptance. It is hard for that negativity to not be absorbed, especially by people who are emotional sponges and highly reflective of the emotional state of people around them.

This is also definitely not to say that a suicide attempt comes along as part of the package of Autistic Burnout, because it doesn't always. I've had periods of intense burnout where I haven't taken that measure. It is however indecently common amongst teenage Autistics diagnosed or undiagnosed; and those who are diagnosed Autistic later in life.

Recent studies show that prevalence of Suicide attempts amongst Autistic people stands at 35% of that population, with suicidal idealisation at 66%. We also know that approximately 10% of all suicides are by Autistic people—bearing in mind we only make up 1% of the population, supposedly. I would hazard that the rate is higher in reality.

I'll talk a little more about suicidal idealisation later.

***

Extreme burnout comes fairly regularly during an Autistic's life, and there is a school of thought amongst the Autistic Community that when Autism first becomes 'apparent' to parents who don't know what they are looking for and have zero frame of reference—you know, the old "They were a perfectly normal toddler, then they had their MMR..." that the child is undergoing Autistic Burnout, and that their apparent "Autistic Regression" is because they have had some kind of event—starting nursery, going to school, home life changes, something sensory—it could be anything for each individual child, some major (to them) change that has overwhelmed them to the point that their Mask (which starts establishing itself very early on) has completely dropped off.

The Mask coming off is exactly what happens during the Autistic Burnout period. Your Autistic traits become more obvious as your brain goes into Safe Mode. You may become more inflexible, your ability to 'mock' making eye contact may disappear completely, your ability to socialise may be drastically reduced or go completely, you may sleep more, want to be on your own more, and bury yourself. Life just gets significantly harder and gravity, as I mentioned before, just pulls you down more and more.

I've left my job. 

Well, my job has left me. 

I was happy there once, for a long time. Then the rumbles of change started, people losing their jobs, major restructure. 

My performance dips, I grow tardy and try to cover it up.  It's halfheartedly noticed and commented on, which just makes my anxiety worse, everyone really is too worried about their own jobs though. 

I spend day after day not doing anything, other than pretending to work, because I'm not coping. My life is spiraling out of control and all I can think about is the look of horror on my Wife's face when I tell her I'm jobless. 

The lack of communication, the vague realisation that the people you work with, the people who have actually helped make life feel sort of good over the last few years are my competition now. All of a sudden it seems like everyone is Autistic, nobody makes any eye contact with each other. 

My replacement, from elsewhere, sits opposite me, I'm to train him. 

I'm offered my job, but a long way away. It feels like the final slap in the face. They know I'm Autistic, they know I have Meniere's disease and can't go that far on the bus—what'll be a two hour journey every morning and night. 

I walk out. I ride the bus home. I go to bed. 

I don't know what to do.

Then the click. The flick of the switch. I feel it deep inside me. I recognise it with abject horror, i remember the feeling. I remember the lack of self control. My mind goes into Safe Mode. 

What to do? How do I explain this to Michelle. I clutch at my throat and my words are gone. 

They come back a time later and I'm able to tell her. 

The horror I imagined was there.

But also love, so much love in those deep brown eyes.

I was safe in them. The only eyes I've ever been able to look at.

Eyes I can distinguish the patterns in and lose myself in.

I clutched her tight and the Mask dropped off.  

I heard it slide to the floor and crack in half.

The next few months were like wading through treacle, physically, mentally, and emotionally—but equally I was wound tight as a spring. My sensory sensitivity was incredibly heightened, I couldn't tolerate noises, smells, too fast movement, anything really.

Doing the simplest of things exhausted me, and still at that point I had no real understanding of what was happening to me. I was an Autistic man on anti-depressants for the umpteenth time of my life, completely not depressed, but not knowing how else to explain it.

The truth is, I was relieved not to be at work—it gave me the opportunity to switch off, which I needed, desperately. Had it not happened I think I may have looked at the suicide option again.

As it was around nine months later I started to wake up again—my mind and body felt more alert than they had in years. 

Michelle and I have talked extensively about that period, and the period after. and she sees the difference in me. She recognises that I Masked an awful lot with her from the moment we met, despite my attempts not to, and doesn't see it as me lying to her; she understands that I was doing what I did to survive, and often unconsciously.

My period of burnout saw me unable to function really at all. I was kind of a vaguely absent father—there, but going through the motions, rather than actively engaging.

We struggled financially, I started proceedings for constructive dismissal, but was so crushed and lethargic, and the proceedings were through a Council process which was massively bent in the Council's favour, so we gave up.

I can honestly say that those months were tortuous. We came within a hairs-breadth of losing our home. I expected Michelle to ask me to leave and wouldn't have blamed her if she did. But somehow we came through it and I came out of it.

I came out as someone desperate to know what had happened to me. The pieces were falling into place that there must be a better way, there must be reasons.

So I turned online and found Autistic people. I started talking and learning, realising that ideas and narratives that had been floating around in my head actually existed and had names—things like Neurodiversity.

I found the Autistic community.

I stumbled into this world; metaphorically, my eyes shielded by my arm from the glare of Autistic gold shining back at me.

I've not looked back since.

***

I said earlier I wanted to talk more about Autism and Suicide. 

Sadly the two seem to go hand in hand.

But not all suicide amongst Autistic people is directly attributal to Depression, because not all Autistic people are depressed, as I mentioned before.

Earlier I touched upon my experience at fourteen and explained how it was less an attempt to end my life and more being backed into a corner and it being the only way to get away from the situation I found myself in.

Anecdotally, I have talked to a significant number of Autistic people about this (a few hundred) and have found that their experiences matched my own—not only in the 'why' they had attempted suicide, but also in that, like me, they are pretty much constantly thinking about ways they can do it.

The noise of the traffic is too great. 

The cars are screaming past, one of those motorbikes that sound like giant broken hairdryers is gunning its engine unnecessarily. 

The sun is glaring down upon me, the warmth is nice but the light is too bright, too strong and I don't have my sunglasses. 

A throng of people are walking round, I'm like a rock in a river with the current parting round me, but I'm being buffeted and jostled, my body is burning. 

Somehow I'm forced to edge of the street, right to the curb. 

My head is spinning, eyes feel like they're vibrating in my skull, my teeth hurt, everything is building and rising. I look up the road and see a bus coming, no chance of it slowing. 

I step in front of it. 

The world falls silent, everything slows. The bus coming towards me in slow motion, blurred with movement, feet away, inches away, the look of realisation dawning on the driver's face as he sees me, contorting into fear and horror. 

A glance back over my shoulder at the oblivious people, heads down, intent on their journey, not noticing the person about to dissolve into peaceful oblivion. 

Stepping out. 

I close my eyes, my arms open wide, embracing the stillness about to come, a world of soothing dark, comforting silence. 

I can feel the roar of the wind, the roar of the engine comes, the world kicks into normal speed and... 

I'm back on the pavement, jostled and bustled, ears assaulted with noise as the bus speeds past me.

I do this all the time and so do so many Autistic people.  Stepping into traffic, jumping off of things, taking pills, all manner of things.  It ebbs and flows, depending on what your are doing or where you are.

These are not intrusive thoughts, as such. It's almost like they are deviations on a path, where in one world you make the choice to step out and in the other you don't, but you bear witness to both those paths at once, for just a few moments—the intensity of the situation allowing you to witness a shearing of worlds, of universes, where in one you die and in the other you carry on.

We generally don't want to die.

We want to escape.

We want to step out.

The world is an overwhelming place for us—it doesn't have to be, but the way it's set up with colours, noise and lights and people and expectations makes it so.

We lose ourselves in repetitive behaviour, we Hyperfocus, we Stim, we become different characters or act as animals, we script conversations, we withdraw, we hide in worlds inside our heads, we close ourselves off, or equally sometimes explode outwards, we Mask—all in an effort to endure this world we live in, to survive, to find balance with ourselves internally and externally and also, to hide who we we are—to make Non-Autistic people accept us, because we don't find acceptance as ourselves.

This is why we burn out.

***

The warning signs of Autistic Burnout are actually quite easy to spot if you know what to look for, either from an external point of view, as an observer, or loved one or internally, from an Autistic self's point of view:

• A growing lethargy
• An increase in irritability
• An increase in anxiety
• An increase in over-sensitivity to sensory information
• A dramatic decrease in sensitivity to sensory information
• Heightened Auditory processing disorder
• A decrease in verbal language
• A decrease in text language
• An increase in Shutdowns and heightened withdrawn state
• An increase in the frequency and severity of Meltdowns
• A diminished ability for the person to self-regulate their emotional state
• The slowing down of the thought processes
• Brain fog
• Memory loss 
• A decrease in your ability to effectively communicate what you want 
• A decrease in motivation
• An inability to generate momentum of body and of action
• An increase of rigidity, narrowing of thinking
• A feeling like your vision is tighter or narrower
• Extreme forgetfulness
• Extreme overwhelm
• A massive increase in guilt
• An increase in Executive Dysfunction
• An increase in Demand Avoidance

(If you think there are more, feel free to add them in the comments.)

Can you see why Autistic Burnout is often mistaken for Depression?

Run through that list again and apply each of those thing to, firstly, a child. 

Say, one who is ten years old or younger.

How would the symptoms of autistic burnout present? You got it: Bad behaviour, defiance, lack of compliance, willful disobedience, withdrawal, self-harm, depression. Especially, if you consider that any child—across what is a huge age range—is likely unable to be able to express or communicate any of those things effectively—if at all—or why they feel the way they do, or even how they feel the way they do, especially if they are Autistic.

If you consider a teenager, who has a mess of hormones running through them, who is acutely aware of how much they stick out like a sore thumb, whose growing self-awareness—their very sense of self—is being fractured by a combination of everything they are going through in day-to-day life and everything on that Autistic Burnout warning signs list; how does it present? Bad behaviour, defiance, lack of compliance, willful disobedience? Or if they withdraw completely, they're described as Moody, as an extreme Teen, they lock themselves away and become more withdrawn, less social, less able to function. Through it all they are still unlikely to be able to communicate any of this.

Now apply both those scenarios to an Autistic person who is undiagnosed. From the outside looking in, they are behaving 'badly,' 'acting out,' or they are depressive, or angry, so they are drugged and Therapised, or treated to such delights as PBS or ABA to 'improve' their behaviour,' or they're just left to get on with it and kill themselves, or get caught in a cycle of self-harm, or get wrapped up in short bursts of highs to make them feel better, as in drugs or criminal behaviour, as they fight against themselves and how they are feeling—or all of those things.

It sounds drastic doesn't it? 

Yet it's happening every day. 

Mostly because people do not know or understand 'why.' There are a myriad of reasons so many Autistic kids (diagnosed and undiagnosed) are in the young offenders system, and then further on, Autistic adults in the Prison system.

***

So what can we do to to ward off Autistic Burnout and what can we do to mitigate it once we're in it?

Firstly, acknowledging and accepting that Autistic Burnout is a thing, and you or your child will go through it—Social Burnout pretty frequently, and Extreme Burnout at least a few times in you or their lives.

On a basic level, allowing periods of withdrawal, or decompression time at the end of the day, or even throughout the day can make a big difference. Time where the child can effectively take time to process what has happened throughout the day, shut off external sensory stimulation and basically be inside their own head for a period of time. You may also find that this helps with the level of and freqency of Meltdowns that occur. Especially if you or your child Mask and do the "Coke bottle" thing of bottling up everything all day and exploding at home.

Adults and children both need to proper time to withdraw. So even at Social events or Social Situations, having an escape plan is vitally important. A reason to leave, either completely or temporarily, a quiet space or bolt-hole to enable whoever it is to just have some time away from people.

It's really important to recognise also, that after significantly stimulating or potentially overwhelming events or periods, that the person may need a day or two off of work or school. This may not be realistic, but it is effective. Allowing this decompression time is incredibly important. It allows the Autistic brain and equally the senses, an adjustment period to reestablish whatever the person's brain or body considers normal parameters. 

If the person is of school age, then it will definitely depend on your relationship with the school and how frequently they need decompression days, but my philosophy is generally that my child's mental and physical health is more important than a day at school—if they need a decompression day, they take it. 

If I need to be fined by the school, then so be it, but I'd love to see someone try.

Work may be a little more difficult but, again, it depends on how good a relationship you have with your workplace. If for some reason you can't take a day, then taking as much free time to yourself as you can, with as minimal mental and sensory stimulation as possible is the best you can do. It won't be enough forever though.

Once you're in burnout, you need to learn to recognise and accept that you are in burnout. 

There isn't a huge amount you can do beyond throwing away that Mask as soon as possible and taking as much space as you can get with as minimal sensory input as possible. Some people find that doing hands on tasks helps them; others go for long walks, or immerse themselves in books and films.

Sometimes it drags on and on, sometimes you can see it coming and not be able to stop it.

The period I'm in now was triggered by me, if I'm totally honest.

Autism Awareness week in the UK was, this year (2018), incredibly busy for me and so was the week preceding it.

I established a working relationship with the North East Autism Society earlier in the year and they asked if my family could be their campaign—so, hours of filming, I blogged everyday, I made videos for the first time, spoke on various radio stations, we featured across several newspapers five or six times over the course of the week, plus I also had a trip down to London for the launch of the Westminster Autism Commission report on harmful interventions, plus had to respond to the hundreds of Tweets, Facebook Comments, messages and emails that were thrown at me.

All in all I threw myself into the whole week.

If you've gotten this far down this article, you can probably imagine by now what I felt like after all that. I have written the majority of this article in one day, for the last six weeks since Autism Awareness Week, I've written nothing, not a word.

As I said at the beginning, the irony being that I wanted this to be about burnout, yet didn't have the strength to write a thing.

***

The biggest thing of all you can do to prevent, or at least mitigate burnout, is to start identifying what you do when you Mask and stop.

Even just little things like eye contact, which so many of us do, or at least pretend to do.

Allow yourself not to be sociable if you don't want to be.

Give yourself permission to duck out of situations you can't cope with instead of pretending you can.

Got something important to do? 

Cut out as much of the other crap as possible—give yourself a break, go hole up in a cupboard under a blanket for a few hours, or alternatively, if you are able, go and run or cycle really, really fast (sometimes the wind rush can literally help clear away the cobwebs because so much sensory information is cut out).

A big sensory break every few days, or weeks, coupled with smaller sensory breaks throughout the day could make the world of difference to your life, or the life of your loved one.

The biggest thing of all you can give yourself, or your loved one, is time.

I've experienced Extreme Burnout probably four or five times in my life, lesser burnouts a significant number more, and social burnout pretty much daily. The biggest thing that has helped me avoid and mitigate burnout is learning about myself, and the way I have done that is by connecting with the Autistic Community.

I have learnt to understand the 'why' of why I react to certain things in certain ways, I've learnt to understand 'how' to best avoid certain situations or to shield myself from them with Masking.  I've been supported into learning how to Accept myself and shuck off, to a certain extent what has been thrown at me.

Autistic people have the tendency to want to pull people together because of their similarities, not push them apart because of their differences; we are accused of wanting to be solitary, of not wanting to be around people, when we have one of the strongest Communities I have ever witnessed.

The Autistic community is there waiting to be accessed by Autistic people and their families alike; a font of deep knowledge, a library of cross-referenced and correlated information about Autism, that you will not find coming from an Autism 'Expert' or 'Professional' and you will certainly not find in the DSM 5 or ICD 10/11.

Autistic Burnout is one of those things you will not learn about from Professionals, yet Autistic Burnout leads to death. How horrifying is that?

So please, play your part today and help yourself, or your Autistic loved one to recognise it and take appropriate steps to stop it.

Help save a life.

I'm coming out of my burnout period. I feel like mentally and physically the fog is lifting—I'm starting feel like gravity is slightly less effective than it has been, I'm still exhausted and have been sleeping sometimes 14 hours a night—which is bizarre for the person who has spent his whole life averaging four to five hours a night, and actually has made me more tired than refreshed I think!

I know the burnout is coming to an end because I'm writing again. It's taken me six weeks of staring at a computer screen and writing nothing. Yesterday I wrote most of this in about three hours. I'm on an upward trajectory again and it feels good. Still not quite there though, my Executive dysfunction is still playing merry hell—I've been tinkering with this essay now for five days!

Sometimes knowing what you are experiencing makes the experience less frightening and easier to manage, and offers you a level of control over the situation. Expecting that burnout will happen helps too.

If society changed to accommodate Autistic people, our lives would be a lot easier. Instead though, for the most part we are still expected to change ourselves completely or play catch up—so if there are ways where you can make your life easier, and not damage yourself in the process as with Masking, then I recommend you do them. There is rarely support for this, except from Autistic people, or if you're lucky enough to have understanding family—so self-care is your priority.

A key thing to remember here, because there are proponents of a theory that much of what is identified as Autism is actually the descriptor to a response to lifelong trauma, and I know that much of what I write here could be seen to be backing up that theory:

As a disclaimer: That theory could not be further from the truth. Trauma does play a huge part in the the Autistic upbringing and life, but that feeds into Anxiety. Autism itself is determined by Neurology. Our Neurological functions are different from birth, our brains work differently. Trauma does not play a part in shaping our basic Neurology; trauma plays a part in shaping our personalities. Autism is Autism.

Autistic Burnout is real. It exists.And it plays a huge part in taking our lives.

Repeated short term burnout is completely unsustainable and has huge long-term implications.

So please, whatever you do, take care of yourself.

Kieran.

***

Some other links about Autistic Burnout:

The wonderful Amythest Schaber: What Is Autistic Burnout?

The brilliant Ryan Boren: Autistic Burnout: The Cost of Coping and Passing

The excellent Judy Endow: Autistic Burnout

----

SUICIDE RESOURCES

Anyone who is feeling suicidal may receive immediate help by logging onto Suicide.org or by calling 1-800-SUICIDE. Suicide is preventable, and if you are feeling suicidal, you must get help. So please visit Suicide.org or call 1-800-SUICIDE immediately. Please also know that you are not alone.

MHAutism, which focuses on mental health for autistic people, has developed a Safety Plan, which allows those who are vulnerable to plan for when and if they experiencing suicidal thoughts, and also to record information to help other people provide supports.

For autistic people seeking specifically autistic perspectives, please read our archive posts below. While aimed towards younger people, they discuss getting through the kind of tough times familiar to autistic people of any age who have been conditioned into negativity:

• For Autistic Teens Feeling Doomed or Broken 
• Advice to Young Autistics: Stick Around and Become Awesome

----

A version of this article was previously published at www.theautisticadvocate.com. 

Read More

Autism, Transmasculine Identity, and Invisibility

The Transgender Pride Flag
By SVG file Dlloyd based on Monica Helms design [Public domain], via Wikimedia Commons
[image: A flag with five horizontal stripes. The center stripe is white, flanked by two pink stripes,
then a light blue stripe at the top and the bottom.

Devin S. Turk
@devinst97

Everyone in my life knows that I’m transgender. Comparatively, very few people know about another major part of me: that I’m autistic.

At age twenty-one, I’ve come to understand that many of my young adult years have centered around trying to bridge the gap between my two ways of being: The way that I present myself to the world, and the way that I perceive who I am. I imagine that someday, hopefully soon, those two components of my life won’t feel far apart. And hey, sharing this essay might even help.

I realized I was trans when I was fifteen, but just a year before had come a revelation of similar scale and importance to me; my diagnosis of Asperger’s syndrome (which is now referred to as Autism Spectrum Disorder.) I experience many symptoms or “traits” of ASD, and I won’t mention all of them here, but it’s worth saying that my traits are not obvious to the untrained eye. Underneath the mask, though, lies a deep unsureness of how to regulate social interaction. To cope, I copy, or “mirror” other people in order to appear more socially fluent and less awkward. And it works. Many people close to me might say that I “blend in” very well, in more ways than one.

Now that I’ve been on testosterone hormone replacement therapy for close to three years now, my voice is deeper, my jaw is squarer, and I even have a bit of facial hair. When I tell people that I was assigned the sex “female” at birth, they often say something to the effect of “I would have never guessed!” This is typically meant as a compliment, but to me, it feels patronizing.

In an eerily parallel way, people react very similarly when I disclose to them that I’m autistic. In both scenarios, the disbelief is caused by the preconceived notions of what it “looks like” to be transgender or autistic. I credit the testosterone as the reason I am not read as female, and to some degree, I credit my socialization as a reason I am not perceived as autistic.

Professionals who diagnose Autism Spectrum Disorder are, in general, proficient at recognizing autistic traits in males. After all, the original model for autism was based on studies of mostly young boys. Some doctors are still catching up to being able to recognize such traits in girls and women, but people are becoming increasingly aware that autism presents itself differently in girls than in boys. For example, autistic girls are more likely than boys to be masters of “social camouflage,” which masks their traits of ASD.

So, where do I fit into this framework as a transmasculine person? Yes, I identify as more male than female. However, I lived the first eighteen years of my life as a girl, and so I believe many of my ways of interacting with the world are byproducts of being socialized as female. But when I walk into my doctor’s office, they will likely overlook the significance of my history because they see that I now present as male, despite having a lot of learning experience in the world as a girl.

I’m the same degree of socially clumsy and unsure as when I was presenting as female, yet doctors who are new to my case and doctors who don’t know me well are less likely to agree with my diagnosis. Doctors will commonly overlook my noticeable lack of eye contact and my significant difficulties with Sensory Processing Disorder (which is a common co-occurring condition in autistic people) or severely under-appreciate just how utterly exhausting it is for me to engage with others. Maybe they don’t understand how much my executive dysfunction holds me back. Maybe they don’t believe me when I tell them that when I’m alone, I often flap my hands when I get excited as a means of expression, or that I rock back and forth when I’m focused on something. All of these experiences are very real to me, and yet they seem invisible to so many medical professionals, simply because I don’t outwardly appear to check all the boxes while I’m sitting across from them.

In addition to feeling unheard and unseen, my autistic traits are sometimes swept under the clinical rug and regarded as symptoms of conditions such as depression or severe social anxiety. I suppose it’s an easy enough mistake to make, but such a misunderstanding of my neurotype can lead to misdiagnosis, which could potentially then cause doctors to prescribe medicine and recommend treatments that may do more harm than good.

After receiving handfuls of labels from the DSM as well as literally dozens of unsuccessful psychiatric medications over the years, I’ve learned that much of the way I am is not something to be treated with various therapies and pills. This is not to say that autistic individuals cannot experience things like depression or anxiety which may be very much relieved via therapy and/or medication. I have simply realized that in my specific situation, the best route from here forward is perhaps to make peace with and embrace the qualities that set me apart from neurotypicals, or those who don’t experience neurological differences.

The intersection of being both autistic and transgender is more common than one might think. While the dialogue around autism and gender identity is expanding, I have a bit of trouble figuring out where I fit into the whole picture. So, I decided to do my own research, and while this subject is a fairly new field of study, I found some pretty astounding statistics:

In 2014, a U.S. study of 147 children (ages 6 to 18) diagnosed with ASD found that autistic participants were 7.59 times more likely to express gender variance than the comparison groups. Another study, conducted in the UK in 2015, involved 166 parents of teenagers with Gender Dysphoria (63% were assigned female-at-birth.) Based on parents’ report of their children on the Social Responsiveness Scale, the study found that 54% of the teenagers scored in the mild/moderate or severe clinical range for Autism.

The relationship has only begun to be explored in research in recent years, but I’ve come to realize that there are a lot of autistic trans people out there in the world. As someone who very much values human connection and simultaneously struggles with it, I have to say that looking at those figures provided me an amount of comfort. I discovered that there are a lot of people just like me.

Being autistic and being transgender certainly each has their own respective challenges, though one that they share is a lack of societal acceptance due to stigma. Many people still believe that who I am as a transmasculine person is inherently invalid, just like many other people still believe autism is some kind of tragedy that is to be cured. In contrast, I feel very strongly that who I am as a person is heavily dependent on both my trans and autistic identities, and that they are beautiful things. 

I would not be the person I am today if I did not have the incredible perspective that being transgender as well as being autistic has given me. My worldview has been altered by these two factors in particular in ways that I consider enlightening. Sure, I have tough days. But would I exchange all that I am in return for the promise of a simpler, more typical life? Most definitely not. Because after all, I’ve found that one of the best things about being dealt a different hand of cards is the unambiguous and fulfilling joy that is learning to accept oneself wholeheartedly.

Read More