Showing posts with label mental health. Show all posts

AASPIRE, autism, autistic, Autistica, camouflage, INSAR, INSAR 2018, Lily Levy, masking, mental health, passing, research, suicidality, wellbeing

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

April 29, 2019 / No comments /

abuse, aggression, dignity, fear-mongering, HBO, Kit Mead, Mel Baggs, mental health, mental illness, psychiatric disorders, Savannah Logsdon-Breakstone, stigma, violence

A Documentary About “Scary” Kids Scares Me—On Behalf of the Kids

One of the families featured in A Dangerous Son (Source: HBO)
[image: A white family of four, with two young kids, on a couch together.]

Kit Mead
kpagination.wordpress.com

Content note: Discusses violence and abuse regarding children with mental illness and disability, and the Newtown shootings.

I'm not going to watch “A Dangerous Son,” the HBO documentary that tells “a story about families with children who have psychiatric disorders that lead to violent behavior.” I'm going to avoid it mostly because I have already read all of those stories. Again. And again. And again.

And I have found them incredibly disturbing each time—on behalf of the children who are being written off and exploited. Especially because, as Mel Baggs points out: Across violent and abusive sets of environments, we—the kids—are the only ones seen as having a violence problem.

And those environments are so very often the context for “violent outbursts.” Like mine.

People considered sending me to a school for kids with behavioral problems, after therapy and medication didn’t work to quell my outbursts. Because they were going after the wrong thing: It must, the psychiatrist said, be Oppositional Defiant Disorder and anxiety. Not trauma. Not communication barriers. Not what was modeled as social behavior. Just that I was a rebellious, insolent, violent kid.

A throw-away diagnosis. A throw-away kid.

And I already know the kinds of things they’re going to talk about in the documentary: Parents saying we are desperate, at our wit’s end, we’re scared of our so, so very violent and mentally ill kid. But we’re out of treatment options. The psychiatric hospital is out of beds.

. . .

It’s possible to advocate for and with children who are struggling and vulnerable with some level of dignity, as I have pointed out before, some level of dignity. According to NPR, the director of the film “wanted to show how challenging this situation is both for the child and the family. Often, people assume a child’s behavior is a type of parental failure.” Further, director Liz Garbus told NPR, “Destigmatizing families like Stacy’s who are going through this and seeing how hard they’re trying is really important.”

Well, yes, in part it often is a parental failure, along with the psychiatric industry and other adults in the children’s lives. Whether it is directly perpetuating abuse and violence, enabling it, or failing to recognize the abuse and trauma, it is a failure of adults in their lives. You know what else is a parental and societal failure? Filming kids at their most vulnerable as a way to showcase how “challenging” it is.

You know what’s really important?

Not, as the NAMI spokesperson in the NPR article implies, framing it as a choice between psychiatric beds and intractable violence at home. Because it does not surprise me and my friends that one of the kids’ behavior “didn’t improve” when he got home from inpatient. Because we have witnessed the violence and hostility of inpatient institutions.

Maybe a focus on trauma-informed care and removing sources of abuse and violence in the kid’s life. Maybe that’s also important. Maybe it’s important to fight for community-based services and training providers need instead of more psych beds.

It’s possible to advocate for struggling children with dignity.

. . .

After the Newtown shootings and a particularly bad Gawker article called I am Adam Lanza’s Mother—written by a parent about her 13-year-old son—Savannah Logsdon-Breakstone wrote an article describing being one of the “scary kids,” the right to privacy, and the dangerous assumptions and dismissals people make. Every word of the piece is important, but here is a snippet:

"My mother doesn’t regret keeping it private, between her and her private journal or her therapist. Today she was at a consumer and family advisory for our behavioral health managed care organization (BHMCO). They read that Gawker article, and my mother was appalled. She has scary stories about me, but the idea of sharing them in a way that associated them publicly with me was a horrifying violation of privacy and good sense to her. She was struck by the negativity of the piece, of the author. And she noticed how it relies on and perpetuates stigma, and jumps to conclusions.

"Having been one of those scary kids is scary… What made it scary to have been one is what people assume based on it — and what they assume when you don’t disclose."

I Am Adam Lanza’s Mother inspired A Dangerous Son. The author is featured in the movie.

. . .

And what if filmmakers had turned a camera on me capture my worst moments? Then what? Would anyone have seen the context? Would anyone have seen a vulnerable child? Would anyone have stopped to think about the young person whose future they’re so willing to damage? What this might do to them on every level of being?

No. They wouldn’t have, because it’s already happened, over and over again, to others. They chose to exploit. But they could have provided sensitivity and trauma-informed care to a young, struggling person instead.

However lost in life you may think we are: “None of us are lost causes.”

January 18, 2019 / No comments /

African American, anxiety, autism, autistic, AutisticWhileBlack, cure, Disability, Kerima Cevik, masking, mental health, neurodivergence, neurodiversity, neurology, passing, PTSD, Toni Braxton, trauma

#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.

July 26, 2018 / No comments /

ADHD, autism, autistic, depression, epilepsy, learning disability, Maxfield Sparrow, mental health, seizures, Sparrow R. Jones, suicidality, Suicide

When Autistic People Have Epilepsy

Photo © Ivo Dimitrov | Flickr / Creative Commons
[image: Illustration of a human brain, in profile,
made of colorful cogs in various sizes and shapes.]

Maxfield Sparrow
unstrangemind.com

[Content note: This post discusses suicidality, mental health, and death.]

In the early 1990s, I was engaged to a man with epilepsy. He had tonic-clonic seizures and he was a big guy, so I was always alert to the possibility of an episode. I knew there were stores we couldn’t shop in, and roads I couldn’t drive down. I caught his body and lowered him safely to the ground more times than I can remember. I guarded him from the pressing crowd of curious onlookers when he came around after a public seizure. And I worried, feeling helpless, when his medication levels were off, and he had seizure after seizure.

I can’t know what it is like to have epilepsy or to have a child with epilepsy, but I can draw on the empathy I felt for what Bear went through. I'd also like to put a call out to other autistic writers: we need more essays to help other autistics with epilepsy and parents of autistics with epilepsy. (I will write what I can—we need you to write what you live.)

Epilepsy organizations and doctors have drawn attention to the interplay between autism and epilepsy on many websites, and in many books. The Epilepsy Foundation has a page on their site titled, “Epilepsy and Autism: Is There a Relationship?” (The short answer: yes, there is definitely a relationship between epilepsy and autism.) The Epilepsy Foundation underlines that fact on another page for medical professionals, titled “The Complex Relationship Between Autism Spectrum Disorders and Epilepsy,” which says, “There is a strong association between autism spectrum disorders (ASD) and epilepsy.”

While 1% to 2% of typically developing children are diagnosed with epilepsy, it is estimated that as many as a third of autistic children have epilepsy. The Epilepsy Foundation calls that “(a little) more likely to have epilepsy” but I think a jump from 2% to 33% is a far more significant shift than “(a little).” Not only do autistic children have a much higher rate of epilepsy than the general population, but a 2011 study of children with epilepsy found a 5% rate of autism (compared to the 1% to 2% range of autism in the general population) among children diagnosed with epilepsy (and mentioned an older study that found a 14% autism rate among children with epilepsy). Additionally, an estimated 25% of autistic people develop a seizure disorder at puberty, after being seizure-free or otherwise undiagnosed throughout childhood. It is also well-documented that epilepsy is a leading cause of death for autistic people.

The Epilepsy Foundation has stated that, “epilepsy associated with ASD does not change the evaluation or management of seizures,” however the higher co-occurrence rates of epilepsy and autism indicate that considering the two together and talking about how one affects the other is crucial.

Depression

Depression and anxiety are so important that I dedicated an entire chapter to them in my last book, The ABCs of Autism Acceptance. I cite research statistics about autism and depression in that chapter such as the British study that found that 71% of autistic children had a mental health issue while 40% had two or more mental health issues. Autistic children have 28 times as much suicidal ideation as non-autistic children.

Add seizures to the mix and those figures take a sharp turn upward. The Epilepsy Foundation reports that 20% of children with epilepsy have thought about suicide. Obviously the combination of autism and epilepsy dramatically increases the risk of depression. After factoring out pre-existing psychological disabilities, the suicide rate among people with epilepsy is twice as high as that among people without epilepsy.

Keep a watch for the signs of depression and don’t be afraid to talk to your child about depression. Remember that autistic people don’t always show the same signs of depression as non-autistic people and often we need depression treatments tailored to us.

Learning Disabilities

Half of all people with complicated or difficult to control epilepsy have psychological comorbidities including learning disabilities, for example the rate of ADHD among people with epilepsy is twice as high as it is among the general population. Many of the traits of ADHD overlap with autistic traits, so this is another place where epilepsy and autism can combine to increase the likelihood of executive function issues.

Emotional Regulation

Many autistic people struggle to regulate our emotions. Emotional regulation can be a struggle for people with epilepsy, too. If your child is autistic and has epilepsy, any burst of rage might genuinely be out of their control. Epilepsy also can cause a wide range of emotional distress. In addition to the situational depression that can come from struggling to control seizures, there is a condition called interictal dysphoric disorder (IDD) that is marked by depression (dysphoric) between seizures (interictal) and worsens when seizures are less controlled.

I spent some time reading public Twitter messages from autistic people about seizures and noticed many comments about depression, anxiety, and anger occurring before and/or after seizures. If your child is autistic you’re probably already used to discerning the difference between meltdowns and non-meltdown expressions of anger. If your autistic child also has epilepsy, you need to watch for epilepsy-related anger as well. Understanding your child’s emotional landscape becomes more complicated with both autism and epilepsy in the mix.

Further Resources

On the Web

A Guide to Managing Epilepsy in Autism, from Autistica: www.autistica.org.uk/downloads/files/Epilepsy-autism-E-LEAFLET.pdf
A Review of Traditional and Novel Treatments for Seizures in Autism Spectrum Disorder: Findings from a Systematic Review and Expert Panel: www.ncbi.nlm.nih.gov/pmc/articles/PMC3859980

Books

Silently Seizing: Common, Unrecognized and Frequently Missed Seizures and Their Potentially Damaging Impact on Individuals With Autism Spectrum Disorders by Caren Haines, RN: www.amazon.com/dp/B00A4HPJCI

June 18, 2018 / No comments /

autism, autistic, Corina Becker, CRAE, education, health care, IMFAR, IMFAR 2017, INSAR, Laura Crane, mental health, participatory research, Shannon Des Roches Rosa

Supporting Autistic People in Health Care, Education, and The Criminal Justice System: An Interview with CRAE's Laura Crane

Shannon Rosa from Thinking Person's Guide to Autism and Corina Becker from Autism Women’s Network interviewed Laura Crane from CRAE, the UK-based Centre for Research in Autism and Education about her work in supporting best practices in health care and education for autistic people, and also demonstrating that Autistics, children specifically, can be reliable witnesses during criminal investigations.

Laura Crane | Photo: CRAE
[image: Smiling white woman with long brown hair.]

Shannon Rosa: Why don’t you start by telling us a little bit about the work that you’re doing for CRAE, because it seems like you’re involved in so many things.

Laura Crane: My research focuses on two main areas. The first is looking at how we can support autistic children and adults within the criminal and family justice systems. A lot of that work has come from police officers and barristers and other legal professionals assuming that autistic children and adults can’t give good evidence.

In one of the projects I’ve been involved with, we’ve replicated a real-life criminal investigation. So the children watch a staged event at their school, that involves a little theft. We interview them like a police officer would, both straight away and again about a week later. We do an identification parade with them, where they have to identify the perpetrators from a line-up. We cross examine them with real barristers. And we also show the general public—so people who’d be evaluating the evidence of these children as part of a jury—their evidence, and ask them to rate how credible the kids are—and actually you find that autistic children who don’t have intellectual disabilities are often just as good as their typical peers. They may recall slightly less information if you give them quite open questions, but if you interview them appropriately you can get reliable, accurate evidence from them at all stages of the process. And I think that’s something that’s really important for criminal justice professionals to know about. (There’s more about this project on the website www.childwitnesses.com.)

The other side of my work looks at how we can best support autistic people within health care and education. So we’ve done work looking at family doctors, knowledge and awareness of autism, and also one of my favorite projects has been a study on mental health in young autistic people, called Know Your Normal. The reason I like this project is because it was co-produced with a group of young autistic people from the charity Ambitious About Autism. They came up with the idea for the study. They told us how they wanted to research it. They put it together with our advice and input. We helped them analyze and interpret it and they wrote the report with us.

Shannon Rosa: That’s phenomenal. I saw that you were just in the same panel that I was reporting on, regarding mental health crises, but that was all based on US criteria and surveys—so I’m wondering if you had any thoughts on whether you see differing levels of support for autistic youth in mental health crises in the UK?

Laura Crane: No.

Shannon Rosa: Oh shit. Seriously?

Laura Crane: It’s sometimes a pretty bleak picture in the UK as well so we have similar problems in terms of professionals who don’t feel confident and don’t feel knowledgeable in how to support autistic people, and from our work on mental health in young autistic people there’s loads of problems in terms of navigating the system. People don’t know what works for them and I think a general problem is we just don’t listen to people enough. A lot of the time the young autistic people know exactly what would help them and what they want, but people have ideas about what should be being done and general ways to do things (based on what works for non-autistic people) and that doesn’t always work for autistic people. You’ve got to be really flexible and you’ve got to work with people as individuals, and that doesn’t happen enough.

Shannon Rosa: Well, one of the things I noticed they talked about in the mental health panel just before here is that a lot of times the mental health professionals, the psychiatrists, actually were less likely to refer their autistic kids to public support interventions from the police or in the ER, because they were worried that their autistic patients actually would not get the help they needed due to lack of autism understanding—and that the situation would get worse rather than better. Is that something you see in the UK as well?

Laura Crane: Yeah, I think there’s a problem both in mental health and in criminal justice with people just not knowing what to do. People aren’t trained. People go to mental health professionals, for example, because they’re the “experts,” and the experts don’t know how to best support autistic people having mental health crises. I think a lot more needs to be done, more broadly in terms of people who are vulnerable, but particularly in relation to autism. In the UK we have legislation specific to autism that means people should be getting the help and support…

Shannon Rosa: Does that mean the funds are there?

Laura Crane: Somewhat. But I think there’s broader problems too. There aren't very many services, but also people at the front line don’t have the knowledge that they need. They don’t have the awareness. And they’re aware of that. They want training. They want support. But there’s often no one to provide it.

Shannon Rosa: So that’s the gap, again, the lack of professionals who can actually do the work, similar to the U.S.

Laura Crane: It’s a huge gap, yes. Very similar to the U.S.

Shannon Rosa: And we’re supposed to be the countries who actually are on the forefront of providing support so this is just …

Laura Crane: I know. I went to the session on underserved populations as well, which paints an even bleaker picture because we’re not meeting the needs of a lot of autistic people and then there are other groups that are even more vulnerable and falling through the net.

Shannon Rosa: Yeah. So was that the session on barriers to diagnoses for low socio-economic status and minority communities?

Laura Crane: Yes. It was really depressing.

Shannon Rosa: It is really depressing. One of the things that stood out to me was because of lack of resources, and also general distrust of professionals, they tended to go toward complementary and alternative approaches—and if you’re in the low SES situation to begin with, none of that stuff is covered by insurance, or rarely. So that’s depressing. I don’t know if you see that also in the UK in your healthcare work, but then you have better access to healthcare than we do in the U.S.

Laura Crane: We have freely available health care without insurance.

Shannon Rosa: Yes. So is this something that you see happening because of lack of trust in the healthcare system or when people turn to it..

Corina Becker: Or is it like in Canada where you have really, really, really long wait lists for everything? I’m from Canada and we have really long wait lists for what services are available, if they’re available at all. Sometimes what’s available depends on where you are.

Laura Crane: That’s very similar to what we have and often funding for services is set up and they’re working really well and then the funding gets taken away. So someone would be near the top of the waiting list and they wouldn’t get anything. That’s a problem many young people told us about in our research on mental health. And sometimes people are receiving great support from that service, but it suddenly stops and then they’re back to where they were in the first place. There’s a huge problem with funding and with waiting lists in the UK. In terms of getting the diagnosis in the first place, for example, we’ve done some survey research in the UK, showing that parents have to wait on average three and a half years for an autism diagnosis for their child and adults are waiting two years from when they first contact a professional.

Corina Becker: In the city where I live, in a small city, just the wait list for the wait list for a diagnosis is two to three years, as an adult. The wait list to get onto the wait list. Because the original wait list to get into the free clinic is a couple of years long. But if you go to the private clinic, which costs a couple thousand bucks, then you can get in. But you have to have the couple thousand dollars to then pay and even then you might not get a diagnosis, because the professional’s bias might be like, “oh, you meet all the criteria but you have a job, therefore you can’t be autistic.”

Shannon Rosa: They have outdated notions of what autism is, like many professionals.

Corina Becker: Or, “you’re a girl so you can’t be autistic because you’re a girl and everyone knows that there’s only so many girls. It’s rare in girls.”

Laura Crane: In our research, professionals acknowledge these challenges. They say it’s really difficult to diagnose certain groups, like adults who don’t have intellectual disability, and also women in particular. And it delays the process and it makes it harder for everyone involved. Another big issue is that there’s often not much support when people get an autism diagnosis. Autistic people and their families often see a diagnosis as a gateway to help and support, and they’ve been fighting for years to get the diagnosis. But they finally get it and they’re told, “actually, there’s nothing we can do for you.”

Corina Becker: I know there’s a problem in Canada because in some cases it can take a couple of years to get a diagnosis. But then the government of Canada only funds ABA, and in some cases only IBI. So they only fund within the first couple of years. So once you get the diagnosis, it’s too late for what they will actually fund. So—as much as I don’t like those services they provide, this is why all of the parents in Canada are caught in a bind as to what services are available.

Shannon Rosa: It’s really frustrating and we have the same thing here. And going back to the previous question about complementary and alternative (CAN) treatments … that’s what we hear too. People get handed a diagnosis for their kids and then they don’t get any follow ups. We were very lucky in that my son was diagnosed at Stanford and they actually did give us a checklist of things to do. But typically that doesn’t happen. And actually, we only got him diagnosed formally a year after we already knew that he was autistic, because of all the hoops and wait lists—even with great insurance. And so, because we were at a loss as to what to do to support our kid, we had actually started doing some of the bogus CAN stuff in the interim.

Getting back to your research, I’m curious about when you went through the recreations of the interviews and cross-examinations, did you tweak the survey questions for specificity for autistic kids or how was this survey developed? How were the questions and the experience, how was it developed?

Laura Crane: When we interviewed the children, we had a variety of different approaches we were trying out. So some children had a typical standard police interview that’s used in England and Wales. Other children had what’s known as verbal labels support, where you prompt them in certain categories to try to get more information. They’re still quite open prompts, but they guide the child to talk about people, or actions, or objects. Other children were asked to use a drawing technique where they had to draw what they saw and then talk about their drawing. And then another group of children had the assistance of something called a Registered Intermediary. This is the first new role in the legal system in England and Wales for a hundred years.

Registered Intermediaries are typically from a speech and language therapy background but are often from psychology or education backgrounds and their role is to do an assessment of the child and advice on how that child can give their best evidence. So they might work with barristers, for example, to make sure their questions aren’t too confusing or complicated for a child of a certain age or level of ability. We’re analysing the data at the moment, but we found that the autistic children performed pretty similarly to their typically developing peers overall, which is encouraging. In my view, the Registered Intermediary role is really promising as it’s all about working with each individual child, and really tailoring things to their profile.

Shannon Rosa: Interesting. I don’t know if you got a chance to review the AutIMFAR chat transcript, but one of the responses that actually went to a big long sub-thread was people talking about how much they hated open-ended questions and how much they needed specificity on their questions, otherwise they wouldn’t know how to answer.

Laura Crane: It’s really, really hard though, because what we know from the research on memory is that if you ask an open question, that’s when you get your most accurate information. When you start making things more narrow and give closed questions, that’s when errors happen. So actually, in a police interview you don’t want to give a closed question. The guidance on this is to give an open question within very specific parameters. So instead of, “Tell me what you did yesterday” saying “tell me what you did between this time and this time,” and trying to keep it open but also narrowing the focus a bit.

Shannon Rosa: That makes sense. Can you tell us some of the things that surprised you from the results of those—I keep saying recreations but it’s because I’m losing words at the end of the conference. Simulations?

Laura Crane: The thing that surprised us—it didn’t really surprise me, but I think it’s surprising for most people—is that the autistic kids weren’t doing badly, and I think that’s really important. I think often if a police officer or barrister sees that they have a child coming in who is autistic, they’ll immediately think, “Well, I might not be able to interview them or we won’t get anything useful from them.” And I think our work really brings it home that you can’t underestimate autistic people and there’s no reason to believe that they can’t do what non-autistic people, can do if you support them properly.

Shannon Rosa: You said this was specifically for kids without intellectual disability. Were there any explorations of kids who did have intellectual disability as police witnesses?

Laura Crane: That’s the next step, hopefully. There has been research on kids with intellectual disability who don’t have an autism diagnosis, and they can provide reliable evidence. Again, it’s often just that they tend to recall less information, so it’s about trying to find ways to appropriately support them so we can get as much accurate information as possible. But it would be great to broaden it out to look at autistic kids who’ve got additional needs in terms of intellectual disabilities and see how they fare and how we can best support them. I think that’s the key. It’s how the police officers and barristers adapt to them and work with their skill set.

Shannon Rosa: So, within the realms of privacy and disclosure, can you talk in general about some positive and negative outcomes you’ve seen in mental health treatment for autistic youth? Or just in generalities or trends? Give us hope?

Laura Crane: Yeah, it was a pretty bleak picture, what we found in terms of mental health. And there are lots of examples of cases where things went really badly wrong, and they shouldn’t have done. But it’s really hard. And I think one of the key things is just the fact that a lot of the adaptations that could be made don’t cost very much money.

This is just an example from diagnosis: When someone gets diagnosed, they often get given loads of written information about their diagnosis, and all of their personal information is included in that. This may relate to mental health crises that have led to the diagnoses, or other things they might want to keep private. And when they have to go and get support for something, even non-medical related, they often have to show it, to prove that they are eligible for that support.

And many people said that what would be really helpful would be having even one sheet that says ‘this person has an autism diagnosis’ that they could use to confirm to people they actually have an autism diagnosis, so they wouldn’t have to give away to strangers a lot of personal information about their private history. So, autistic adults in our research said something that simple would have a really big effect on how happy they would be with the process. So it wasn’t always huge changes to services, even though some of those things are needed. Sometimes it’s just really little things that can make a difference.

Corina Becker: I’ve had to interact with mental health services in Canada, and when I get referred they put down “here’s all your diagnosis,” but when I get referred I don’t know whether that gets sent on. I’m assuming that gets sent on to the psychiatrist I see. But the last time I saw a psychiatrist she didn’t believe I had those diagnoses even though I have an inch-thick folder that I usually have to bring along to any mental health professional to prove the diagnosis that I have and any of my mental health history—to basically say “I know what I’m talking about, about myself.” And a lot of that -- that was a bad meeting. And it’s gotten to be such a practice that unless you have a thick thing of documentation, you’re not believed. So it’s a great idea but at the same time, in practice… I don’t know. Maybe it’s a cultural thing in the different mental health services?

Laura Crane:The thing is who you’re sharing it to. So if you encounter someone that you might be seeing a lot?

Corina Becker: There are some good psychiatrists and there are some bad psychiatrists and the last one I had was a bad psychiatrist. There are some psychiatrists who just don’t listen to you.

Laura Crane: There are two kinds of expertise. A psychiatrist will have their professional background, and they’ll have knowledge about autism from seeing all of their patients over many years, but equally people are the experts on themselves. They know what works for them, they know what doesn’t work, I think that applies to anybody. It’s about listening to people and sharing that knowledge and coming to a mutual understanding and that’s seems to be what’s not really being done, I think.

Shannon Rosa: I’m curious, did you have a sense of how the children, themselves, felt after going through the simulations? Were they happy to do it?

Laura Crane: They had a lot of fun. Everyone always says to me, “ethically, how could you get barristers to cross-examine young children for a research study?” But actually, barristers are really nice to child witnesses because the jury will absolutely hate the barrister if they’re mean to a child. They have to be nice. So they’re very charming and they tell the child how brilliantly they’re doing and then they’ll get the child on side and before the child knows it, they may change their answers. The child doesn’t realize they’re doing anything wrong, but it’s really affected their credibility.

So one of our barristers was talking to the child and the child was quite adamant about something that happened. And the barrister just said to him, “where were you sitting?” and he told them. And she said, “were there people in front of you?” And he’s going, “well, yeah.” And she said, “could you see clearly?” And he said, “if I sit up very straight I could see.” So she said “So if you were slouching down a little bit, maybe you couldn’t see them quite well?” And the child said, “well, yeah, I guess so.” And immediately a jury thinks well, maybe they didn’t quite see it. The child didn’t have any idea they did anything wrong—but it affects their credibility.

We found that it was really common for children—both typically developing and autistic children—to change their answers. The barrister might say, “do you think whatever I’ve said might have happened?” and they’ll say, “well, yes, I guess it could have done.” And the barrister praised them and the child was happy but actually, they’ve been manipulated into changing their answer. It’s very, very subtle and the scary thing was—I can’t remember the exact statistic but about 95%—not just of autistic children but typically developing children—would change their answers in response to at least one of the challenges the barrister gave in our research.

So there’s a lot of work being done at the moment to try to protect children in the courtroom so that their best account of evidence gets given. This is why we have this new role in the justice system, the Registered Intermediary, as I mentioned earlier, so the children have someone to help ensure they can give their best evidence. The barrister won’t be allowed to use words the child doesn’t understand, for example—the Registered Intermediary helps make sure everything is tailored so the child can give their best evidence. And a lot’s being done in this regard, which is really encouraging. Anna Remington, my colleague at CRAE, gave a talk about some work we’ve been doing on autism in the family courts, highlighting the need to address family as well as criminal courts. My work’s very much in criminal justice. So it’s quite exciting, actually. More people are doing research in the area and hopefully it’s going to lead to some really positive changes.

Shannon Rosa: I hope so. Great! Was there anything else you wanted to talk about? The work that you’re doing or CRAE?

Laura Crane: We’re doing lots at CRAE. Very exciting. The thing I like most about working there is the fact that there is this strong ethos of participatory research. That’s the thing I’ve noticed at IMFAR this year, actually. The fact that I don’t think there’s enough meaningful involvement of autistic people in research, in terms of helping to decide on the research topics and the design of the study and how the data’s interpreted. And I think that’s where things need to be moving and that’s what we’re trying to work towards at CRAE. I think following the #AutIMFAR chat, you could see that there was a desire for that but it’s probably not happening as much as it should and that’s a real shame, because the most meaningful projects that I’ve worked on are the ones that we’ve been co-producing. It would have been nowhere near as good as it was, had if we had not had participants' input.

Corina Becker: That’s really great to hear, because I know five years ago there was nothing really participatory and there were researchers who, when I approached them, were interested and were like, “oh, that’s actually a great idea!” but none of them were approaching their research that way. So to see a little bit more of research being done this way, to see more researchers interested in doing this and being open about being interested about this is really encouraging as an autistic person and the growing number of autistic people at IMFAR.

Shannon Rosa: Yeah, Corina and I were actually sitting in a session at IMFAR 2012 in Toronto, and a bunch of us, autistic and non-autistic, all sitting together, having a rollicking time, listening to a researcher tell us that autistic people didn’t have friends.

Corina Becker: And in fact, wanted to have friends.

Shannon Rosa: Wanted to have friends, and just as a generalization. Meanwhile, there were a bunch of us all sitting in the back of the room, laughing out loud. Not able to stop laughing out loud. Not intentionally heckling but just—what was being said about autistic people and friendship was obviously not a valid. And while difficulties making friends may be true for some people, these kinds of overt generalizations then get picked up by the media, and people absorb them, and they become assumed truths with negative implications, and that is wrong.

I think it gets back to what you were saying about the need to evaluate people individually and treat them as individuals, going by a broad knowledge base. But the knowledge base has to be based on correct information and the less we have autistic people participating in research, the less accurate that broad-based information is likely to be. So I’m really grateful to you and your team for doing the work that you’re doing.

Laura Crane: oh, thank you!

Corina Becker: Thank you, Laura!

May 08, 2018 / No comments /

acceptance, anxiety, autism, autistic, Christine Motokane, mental health, understanding

Mental Health and Autism: Why Acceptance Matters

Photo © Mariana Zanatta | Flickr/Creative Commons
[image: Hand-drawn black-and-white outlined block letters spelling "anxiety"
on a background of "anxiety" written repeatedly in black & filling all space.]

Christine Motokane
www.workingthedoubleshift.com

It is well known that individuals on the autism spectrum are likely to have co-occurring mental health issues such as depression and anxiety. However, mental health is a less-discussed topic surrounding autism, compared to behavior and social challenges, etc.

As an autistic young adult with anxiety, I can give personal insight on this high prevalence. A big part of our susceptibility to issues like anxiety has to do with how we were slowly socialized, either implicitly or explicitly, to believe that an autistic lifestyle is something that is defective and therefore needs fixing. A recent Independent article sums up the strong link between lack of autism acceptance and the development of mental health disorders in autistic people: Research shows that lack of acceptance externally from others and internally from the self significantly predicts depression and anxiety in young adults with autism.

Yet mental health, and having a positive relationship with an autistic identity, are not usual priorities for helping autistic people. And if mental health issues are mentioned with regards to autism, they are are addressed in a pathological way. In this post I am going to write about my experience as someone on the spectrum who lives with mental health issues.

I have written about my struggle with anxiety in an earlier post. However, in that post I talked about some of the symptoms of how my anxiety manifests. I have never written that extensively about the root cause of my mental turmoil being related to lack of acceptance of my being autistic. Although I come across as a "confident self advocate" when I speak about my life experiences, the truth is that I struggle with deep self-confidence issues, and sometimes actually doubt some of my own advice. There is a "monster voice" in my head that constantly tells me, "I am wrong," or that "I am not deserving of support," and other negative scripts. I constantly say, "I'm sorry" to my family or others whenever I feel that my autistic mind takes over. My monster voice is always constantly bringing me down by saying that I am not "entitled to my feelings because I am autistic," and battles with my positive voice or the voice of confidence. I am so hard on myself and I blame myself for all the challenges that life brings me.

Lately, I have been wondering: how did I become this way, or how did I develop such negative thinking which resembles mental self injury? I then realize that the negative scripts and inner anxiety that I developed in my head today were the result of years of growing up, and slowly realizing that disability is something that needed to be fixed. Unlike the children growing up today with the neurodiversity framework, I did not come of age at at time in which autistic advocates were respectfully regarded as the "true experts."

As much as I hate to blast some of my lovely support people like my therapist or my family members on this blog post, they unintentionally—through no fault of their own—contributed to my negative script that I have for myself. Before I go ahead and critique some of the interventions that I received, I want to be clear that I am thankful that I have gotten interventions that enabled me get to the point where I am today. The social skills, emotional and self-advocacy skills that I learned during my adolescence enabled me to be the strong advocate I am today. But for autism intervention, there is always room for improvement.

Throughout my school years, I was taught to camouflage my symptoms in order to blend in and function in the mainstream environment. This was reinforced through behavioral therapy and the school system. A few examples that I can remember include that I was pressured to join clubs, and also sit with a group of kids because that is how typical high schoolers socialized. I was discouraged from socializing with adults such as the other aides at school, or the computer teacher in middle school, because it wasn't considered appropriate. I was socialized to learn about the fashion and other interests that teens through social groups that my behaviorist made (e.g. the "cool" or "not cool" chart) in an attempt were to make me "fit in" better.

All these experiences and others have taught me that I should camouflage and suppress my natural self because I should appear normal. Friends were chosen for me, because people wanted me to be more social. I went along with the recommendations of my support people and parents, and pretended to live as a neurotypical, because I thought they knew best. I tried all I could to suppress my natural way of being—at the expense of my self esteem, and acceptance of my unique neurology.

What the people who helped me didn't realize at the time were the future implications of my mental health as an autistic person. This was because their focus was on making me as self-sufficient and socially adjusted as possible, and by the time I reached adulthood nobody ever considered that what they were doing could unintentionally affect my self-identity and self esteem. But all my energy spent camouflaging myself in order to appear "normal" became mentally exhausting. I started second-guessing myself, and internally beating myself up, over minor social infractions. This is a big part of my anxiety in living as an autistic person.

My experience with special education and ABA demonstrates how the dichotomy of interventions that are designed to optimize the quality of life for individuals on the spectrum can also adversely impact their mental health, and also their self-acceptance of an autistic identity. This is why so many autistic self-advocates are concerned about behavioral modification programs: because of the long-term effects they can have on autistic people's mental health. This is why we need to preach autism acceptance, and center self advocates in developing appropriate supports for autistic people. That means we need to take autistic people's insights, feelings, and desires into account, instead of dismissing them.

Acceptance means training mental health service providers to look at autism and other disabilities as a part of a person's identity, rather than a problem that needs to be fixed. Acceptance means helping to create a world where autistic people don't have to camouflage themselves as neurotypical. Acceptance also means giving supports and accommodations to autistic people of all abilities and support levels when it's asked for and needed. If the world becomes more embracing of the autistic lifestyle, I believe the severity of the mental health problems autistic people have can, in many cases, be lessened.

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This article was originally published at redefiningnormalayoungwomansjourney.blogspot.com.

February 17, 2018 / No comments /

autism, autistic, IMFAR 2017, INSAR, mental health, research

IMFAR 2017: Mental Health Crises in Youth with Autism Spectrum Disorder

Clinical experience suggests such crises occur frequently among individuals with an Autism Spectrum Disorder (ASD). Despite the scope and impact of this issue, there is no systematic research on the measurement or management of mental health crises in individuals with ASD.