May 6, 2019

“What we don't know is what autism without trauma looks like.”

Autism Awareness Month is finally and thankfully over. It's time now for the annual INSAR autism conference. This issue highlights research and conversations from INSAR. This year, autistic priorities were fairly well represented with research on autistic burnout, gender and sexuality, sleep, identity, trauma, and diversity in social intelligence.

Contents:

• We are not okay.
• Trauma-informed
• PTSD, Autism, and Burnout
• Does early intervention actually improve outcomes?
• 10 Autism Interventions
• Diversity in Social Intelligence
• Have you been applying therapy or correction to an autistic child, thinking it was correct to make them 'speak non-autistic'?
• Behavior Analysis the Autistic Way
• Autism: A New Introduction to Psychological Theory and Current Debate
• Inaccessibility Means
• Why Disabled People Drop Out
• How do I disable another?
• Social Control at the Expense of Human Dignity

AutisticScienceLady on Twitter: "13/ Forcing Reasonably Anxious, Stress, and Traumatized People To Comply: Do you know the other place I have seen this dynamic, heard stories about this? It's when autistic children are too anxious to go to school. Their anxiety is so bad, their stress is so absurdly high..."

We are not okay.

Are you OK?

Honestly? Really honestly? A not-Masking response?

No, I'm not OK

None of us are.

We spend our lives saying that we're fine, apologising for anything vaguely negative.

We're never OK, not as long as we're taught that we have deficits, that our behaviours are negative, not as long as we are made to think and made to feel that we do not fit. That we are not 'normal'.

Not as long as people measure us by their own arbitrary yard stick, as long as the majority insist that everything they do is right and 'normal' and everyone must adhere to that, change, hide, or be forced out.

Not as long as we are forced to live in a Society which does not accept us for who we are. A society which singles us out and violently rejects us if we are ourselves.

I've lived many of the issues raised in these answers. Most Autistic people have.

These are the lives we forced to live, simply because of the fact that as much as anyone reading this might declare "There's no such thing as normal", they will still go on to make a judgement based on their Societal view of what is normal.

We Mask because we have to.

Yet Masking kills us.

Our lives are a paradox.

So we choose the slightly lesser evil of the two. As I said at the start, we Mask to keep us safe.

So how unsafe must we be to commit an act of what is effectively self-destruction.

How unwelcome must we feel that we harm ourselves.

Source: We are not OK - The Autistic Advocate

Trauma-informed

What we don't know is what autism without trauma looks like.

Source: Cal Montgomery on Twitter: "I think we know what it looks like. It looks like "autism." What we don't know is what autism without trauma looks like."

We are not okay in school. We are traumatized. We are traumatized by the sensory overwhelm, the neurotypicalization, the therapies, the behaviorism, and the failure of others to cross the double empathy gap.

skye doesn't want your advice on Twitter: "the abuse of autistic children is so expected, so normalised, so glorified that many symptoms of trauma and ptsd are starting to be seen as autistic traits."

In a trauma-informed culture of acceptance, patience, time, and love, we’re not distressed enough to count as autistic in the eyes of systems that have traumatized us and defined us through trauma.

I took him to the paediatrician. The Paed said that he thinks my son is autistic but he can’t diagnose him because the way I’ve supported him so far means he is not distressed enough to meet the diagnostic criteria. He says we should wait until he’s been in school a while and see if that changes things enough to make him diagnosable. That’s right…. my son’s paediatrician says that my autistic way of parenting supports my son too well for him to be traumatised enough for a diagnosis, so we should let school traumatise him and come back later.

Which of course is a bit ridiculous. And, of course, doesn’t mean he can’t be identified as autistic and supported appropriately. But it does mean he can’t be diagnosed, and unfortunately diagnosis is the socially accepted pathway to supports. I’ve been thinking on this a fair bit in the few weeks since that Paed appointment. I was thinking about it before that too, but it’s really been in the front of my mind recently.

Source: undiagnosable autism · Hello Michelle Swan

School-wide ABA and PBS are not trauma-informed. Quite the opposite.

Ann Memmott PGC on Twitter: "@thinkingautism The 500+ page 'standards based' guide to behavioural support, used to train PBS behaviourists in the UK, mentions trauma once in passing. "It is possible that many..'behavioural issues' might actually be manifestations of trauma based responses." One passing mention..." / Twitter

Thinking Person's Guide To Autism on Twitter: "“We are not even off the proverbial starting-blocks in the race to understand #autism & trauma […]. We don't know what it looks like, we don't know how to treat it, & we are told by behaviourists that a quiet child means a happy child?” From @AnnMemmott: https://t.co/QzcUqKqonv" / Twitter

A4AOntario on Twitter: "A crucial read-- on autistics, trauma, the problems of the ABA approach and better ways for establishing safe, trauma-informed care. Thank you @AnnMemmott ! https://t.co/tn4FmYdADH" / Twitter

your friend myk on Twitter: "I just read this and I’m shook. We are a population in ongoing invisible crisis and it is literally killing us. Autistic people have 9x the suicide rate of non-autistic people. Even those of us with low support needs die young. Thank you @KieranRose7! https://t.co/hOZyaqL1xK" / Twitter

PTSD, Autism, and Burnout

The accommodations for PTSD and autism overlap. Here are selections on that common ground from a thread by an autistic advocate:

John Marble on Twitter: "A last thing: When I talk to companies about neurodiversity, I repeatedly find myself mentioning accommodations and saying “by the way, this is one also helpful for people with PTSD”. Even I had seen those two as parallels, but I wonder now how much of our challenges are PTSD.… https://t.co/rRLXpPMrQw"

John Marble on Twitter: "I was at an adult autistic meet-up one time and trauma came up. One combat veteran said “How come the VA treats me for my PTSD, but I have never heard anyone talk about the micro traumas we experience as autistic people just by living our lives in this world every day?”.… https://t.co/NiVpIBrPUC"

John Marble on Twitter: "If anything shows you how unhelpful the current priorities of autism research are, it’s this. So many of the difficulties we experience as autistic people are a reaction to trauma - both large and the minutiae of living our experience in this world day-to-day.… https://t.co/7jVEfJqrWU"

Cumulative sub-acute stresses lead to autistic burnout. I’m currently recovering from a long case of burnout. Here’s a thread on burnout from the INSAR autism conference. We are finally getting research on this aspect of autistic life that autistic people have been talking about for decades.

Thinking Person's Guide To Autism on Twitter: "What is autistic burnout? @cnicolaidis says there are three diff things -Increase in autistic traits (e.g., dysregulating stimming) -loss of skills -Chronic, severe exhaustion (Not lack of interest but inability to act on interests) #INSAR2019… https://t.co/Yw9i6PwPUO"

Thinking Person's Guide To Autism on Twitter: "Preciptators of autistic burnout -Camouflaging/masking -Long term, cumulative load -Life changes (major) @cnicolaidis #INSAR2019… https://t.co/e8osaz0mHi"

Thinking Person's Guide To Autism on Twitter: "Impacts of autistic burnout are intense: Decrease in social well being, and increase in mental illness (Depressions, anxiety, SIB, suicidality) @cnicolaidis #INSAR2019… https://t.co/KJ58DTLWyq"

Thinking Person's Guide To Autism on Twitter: "How to get out of autistic burnout? -Reduce demands -Increased supports -Treatment of co-occurring conditions -Passage of time @cnicolaidis #INSAR2019… https://t.co/LZvj284DP4"

Thinking Person's Guide To Autism on Twitter: "@cnicolaidis believes autistic burnout is a unique phenomenon. It may be precipitated by sub-acute stresses (especially related to life stages and transitions). This is a preliminary study, more research is needing, they are open to partners. #INSAR2019… https://t.co/KLR9dkm7ZJ"

“Sub-acute stresses (especially related to life stages and transitions)”. I’ve experienced autistic burnout out in several times in my life. Looking back, fifth grade was a burnout year. It was the accumulation of years of sub-acute (and some acute) stresses. Fifth grade has gotten more stressful since I was a student. I’m uncomfortable sending my fifth grader into such stress. I see the signs of burnout manifesting.

Why don't we know what PTSD looks like in autistic children? Why don't we have a clear idea how many are experiencing it? I sense that this is because of the deeply problematic core belief in society that autistic distress is a 'problem behaviour' that is to be trained out of us. Looking at that list, anger, depression, aggression, irritability, panic, hypervigilance.... I'm mindful of how many behavioural-intervention checklists I see where those items are listed as 'autism symptoms' and the individual is relentlessly trained and rewarded for making their internal terror invisible to outsiders.

Source: Ann's Autism Blog: Autistic children - Are we helping them after trauma? PTSD. cPTSD.

Does early intervention actually improve outcomes?

Aa a parent of autistic kids, one thing you often hear from education and healthcare experts is “early intervention improves outcomes”. They then sell you some behaviorism.

Are these therapies and early interventions the evidence-based gold standard that some claim? No, they’re not.

Here’s a thread among autism researchers (both autistic and allistic) on the lack of evidence behind the statement “early intervention improves outcomes”.

Sue Fletcher-Watson on Twitter: "Second talk in the School Based Intervention session started with a statement to the effect that “we know early intervention improves outcomes” IMHO this is not an evidence based statement despite the fact that it is trotted out all the time. #INSAR2019"

Catriona A Stewart on Twitter: "Yup and drives intensive 'therapies': from NAP report: "considerable risk of turning every activity into therapy with ‘learning goals’ and ‘observations’ jeopardising the right of children to have free time for play and recreation (UN Convention on the Rights of the Child)"… https://t.co/5bgI24rZnT"

Jo Billington on Twitter: "Early compassion, understanding and acceptance of the child and their family. That would be so much more helpful.… "

Shona on Twitter: "The outcomes they look for never include good mental health. There is just an assumption that autistic people are supposed to be anxious and depressed. It's just part of being autistic. But at least they can comply, give eye contact and accept hugs. Such bad priorities… https://t.co/r7gwCGjA8h”

KristenBottemaBeutel on Twitter: "We have a poster at 5:30 that meta-analyzes all group design early intervention studies. Our main finding is that study quality is too poor across most intervention types and outcome areas to make conclusions about what EI can do.… https://t.co/uzetAJwNwQ"

10 Autism Interventions

Try some “interventions” that work without trauma.

• Learn from autistic people
• Tell your child they are autistic
• Say NO to all things stressful & harmful
• Slow down your life
• Support & accommodate sensory needs
• Value your child’s interests
• Respect stimming
• Honour & support all communication
• Minimise therapy, increase accommodations & supports
• Explore your own neurocognitive differences

Source: Respectfully Connected | 10 ‘Autism Interventions’ for Families Embracing the Neurodiversity Paradigm

When parents contact me for advice, I start them here. Respectfully Connected is a great resource.

Diversity in Social Intelligence

This thread on diversity in social intelligence is relevant to building teams, culture, and psychological safety at school and work. There is a form of social intelligence specific to autistic people. This is likely true for other neurotypes.

Dr Catherine Crompton on Twitter: "It's an exciting milestone for the Diversity in Social Intelligence project today- we have just emailed a summary of our initial findings to our participants! It's also available on https://t.co/LRsTXzaYrz Here's a wee thread of what we've found so far & what we're planning... https://t.co/kbeZTUTtQF" / Twitter

Dr Catherine Crompton on Twitter: "We have two main findings here. 1) Autistic people share information with other autistic people as effectively as non-autistic people do. 2) Information sharing can break down when pairs are from different neurotypes - when there is an autistic and a non-autistic person."

Dr Catherine Crompton on Twitter: "We also found during the task, autistic people are more comfortable with other autistic people - similarly to how comfortable neurotypical people are with neurotypical people. When autistic and neurotypical people are mixed, the self-rated rapport is significantly lower. https://t.co/clt8eM6rWK" / Twitter

Dr Catherine Crompton on Twitter: "This is finding 3) That feelings of rapport between people of the same neurotype accompany these information-sharing benefits - autistic people have higher rapport with other autistic people, and non-autistic people have higher rapport with non-autistic people." / Twitter

Dr Catherine Crompton on Twitter: "Oh, final thing! Here's a copy of the full summary report we sent out. https://t.co/uxCwX8GoV9" / Twitter

Ann Memmott PGC on Twitter: "And those wishing to get to grips with the subject of autism and friendship, may I recommend https://t.co/YiZz9e2rDz as new and groundbreaking research (well, autistic people have known this for years...). Autistic people get on well with other autistic people, generally." / Twitter

Infographs and more are available here.

This research reaffirms what autistic people have been saying. We have our own forms of social intelligence that should be understood and respected.

This study reinforces the need to add neurotype to our D&I statements and codes of conduct. Any time we speak of social intelligence and social skills, we must keep in mind that there are different social intelligences. As DSISD collects and mines SEL data (which I oppose and opt out of), this bears emphasis.

With respect for our neurotype and social intelligence, good things come.

Sue Fletcher-Watson on Twitter: "Broadly speaking feeling more sense of agency and self-determination and greater autistic identity (comfort in being autistic) relate to all sorts of higher physical and mental health outcomes and quality of life. #INSAR2019"

Have you been applying therapy or correction to an autistic child, thinking it was correct to make them 'speak non-autistic'?

Autistic is a culture and community with its own social intelligence. Have you been trying to make children non-autistic?

Ann Memmott PGC on Twitter: "Have you been applying therapy or correction to an autistic child, thinking it was correct to make them 'speak non-autistic'? Encouraging eye contact, assuming that autistic communication was faulty? The news about the new research may be worrying stuff for you. Quick thread/" / Twitter

Ann Memmott PGC on Twitter: "ABA. Content warnings aplenty re videos of ABA being done to autistic children - but if you want to know why autistic people are so very anti this 'therapy', this is a clear and calm guide. https://t.co/XBy3EAt7Ig" / Twitter

Ann Memmott PGC on Twitter: "In the first 50 seconds of this child's whole day of this 'therapy', this well behaved child has been grabbed and physically controlled eight times, including have a toy ripped out of her hands. ABA. No, it's not 'fun'. https://t.co/BsPpMVsk1D" / Twitter

drstevenkapp on Twitter: "A new study is parading 38 children "losing" their autism diagnosis as "recovery", but reported only 3 (of 569) children at follow-up had no diagnoses or need for supports. We should value happy, fulfilled autistic people, not closeted, distressed people, as an "optimal outcome". https://t.co/RauSNB9hQO" / Twitter

Behavior Analysis the Autistic Way

Instead, let’s try behavior analysis the autistic way.

Thread from an autistic autism researcher:

Ann Memmott PGC on Twitter: "Behaviour Analysis. The Autistic Way. An example. Thread. Let's say we have a 5 yr old autistic girl, Sam. Sam is asked to sit still on the floor at school during 'circle time'. Sam does not sit still. Sam gets up and wanders round. What's potentially happening here?/" / Twitter

Ann Memmott PGC on Twitter: "Certainly I'd want to bring in #ActuallyAutistic specialists, if I am a teacher. They can interpret autistic communication, and note any sensory difficulties that non-autistic brains may miss. I'd want to affirm and support Sam, enabling them to be their best autistic selves." / Twitter

Click through for the whole thread.

Autism: A New Introduction to Psychological Theory and Current Debate

Allistic autism researcher Sue Fletcher-Watson (active and well-respected in the ActuallyAutistic community) lists the main takeaways from her new book “Autism: A New Introduction to Psychological Theory and Current Debate”. I recommend this book to all, particularly those in SpEd.

Sue Fletcher-Watson on Twitter: "First, psychological theories of autism, and the research and practice that go with them, are next to useless, unless they are cognisant of and influenced by the experiences of autistic people and their allies. #NewAutismDebate"

Sue Fletcher-Watson on Twitter: "Second, autism is more of a constellation than a spectrum, defined & characterised in multidimensional space that takes account of different components (eg social style, language), co-occurrences (eg epilepsy, learning disability, depression) and intersections (eg LGBTQ+ status)"

Sue Fletcher-Watson on Twitter: "Third, there’s no single recipe for autism. No theory satisfactorily explains all common features. No genetic, neural or biological marker is predictive. No one behaviour unites all autistic people."

Sue Fletcher-Watson on Twitter: "Fourth, theory is important to help us identify the most pertinent questions and ask them in the best way. Theories do a lot more than simply ask “are autistic and non-autistic people different from each other?”* and good research should do the same. *boring!"

Sue Fletcher-Watson on Twitter: "Fifth, even when they can’t explain everything, quality theories do give rise to robust (often innovative) research and yield practical implications. Everything we do in that process should uphold the principles of good, open and participatory science."

Inaccessibility Means

The #InaccessibilityMeans hashtag recently trended. Selections:

Liz Jackson on Twitter: "#InaccessibilityMeans you're considered a troublemaker instead of a change maker." / Twitter

♿️ G Peters on Twitter: "#InaccessibilityMeans spaces, places, systems, policies designed by other humans that exclude you, deny you entrance, reject you and harm you while pretending you are the problem not them."

MC on Twitter: "#InaccessibilityMeans giving up in exhausted silence because you can’t bear explaining access issues or life with chronic pain for one more second. Because there is almost never any explanation that convinces people to acknowledge the barrier exists, let alone remove it." / Twitter

Invisible Disability Project on Twitter: "#InaccessibilityMeans segregating/isolating a bright, eager, disabled student for the sake of convenience. A convenience that serves the District's needs over that of the student." / Twitter

Cal Montgomery on Twitter: "#InaccessibilityMeans the presumption of innate incompetence, enforced by the very people who engineered your incompetence in the first place, followed by the conclusion that you are innately dangerous if you express frustration "for no reason."" / Twitter

Emily Ladau on Twitter: "#InaccessibilityMeans that when the fire alarm goes off during math class in high school and you’re not sure if it’s a drill, the teacher says to you: “don’t worry, the classroom doors are supposed to have a three-hour burn time.” (Yes, this really did happen to me.) https://t.co/4IyGArRUre" / Twitter

LauraR on Twitter: "#InaccessibilityMeans that most school district trainings, & the drills we do with students have absolutely no plans that include disabled students/staff. & people always look annoyed or startled if I speak up with suggestions. Access to staying safe & alive seems important. https://t.co/IHqNGMwYTR" / Twitter

Emily Ladau on Twitter: "#InaccessibilityMeans not having a seat at the table for discussions about “diversity and inclusion” because the table is up a flight of stairs and oh by the way, it’s also a high-top." / Twitter

brownroundboi on Twitter: "#InaccessibilityMeans not having the privilege to express joy on your own terms because if you do, your access to resources, care, and medical assistance will be questioned or threatened."

Why Disabled People Drop Out

Also trending: #WhyDisabledPeopleDropout

Rebecca Cokley on Twitter: "Folks, 50% off students with #disability drop out of college. Check out #WhyDisabledPeopleDropout to learn more. https://t.co/tUMaZ1xi4X" / Twitter

Chrissy🌈🎬💜 on Twitter: "#WhyDisabledPeopleDropout was created to expose the frustration and challenges disabled students face daily in public institutions. Becoming exhausted from advocating for yourself is valid af and the educational system wasn't developed for disabled people to succeed." / Twitter

PleaseOfferMeASeat on Twitter: "#WhyDisabledPeopleDropOut Because you're expected to already know what adjustments you need in the new environment, and to be able to self advocate straight away, happily declaring your disability to anyone and everyone who might need to know" / Twitter

AutisticScienceLady on Twitter: "Yep. And for #ActuallyAutistic folx, we're expected to meet "in-person" and be able to communicate fully to neurotypical people on their terms. Obtaining accommodations is ALREADY INACCESSIBLE to us! 1/3 #WhyDisabledPeopleDropout https://t.co/K9wU1zjVY3" / Twitter

AutisticScienceLady on Twitter: "#WhyDisabledPeopleDropout They have to spend all of their energy on trying to get universities to make their campus accessible. https://t.co/R01vM1FwO5" / Twitter

Amy Sekhar♿️ on Twitter: "#WhyDisabledPeopleDropOut A thread. As a former faculty member, I have heard several colleagues complain about accommodations as being frivolous. If they are willing to say these things in front of a very visibly disabled colleague, what do they say behind closed doors? 1/" / Twitter

AutisticScienceLady on Twitter: "Yep. And for #ActuallyAutistic folx, we're expected to meet "in-person" and be able to communicate fully to neurotypical people on their terms. Obtaining accommodations is ALREADY INACCESSIBLE to us! 1/3 #WhyDisabledPeopleDropout… https://t.co/dkIabWKrLY"

These hashtags are great sources of perspective. Give them a scroll. I directly relate to many of these.

How do I disable another?

The social model prompts us to ask the question, “How do I disable another?” Walk our hallways and classrooms and ask this.

John Marble on Twitter: "The social model of disability has its flaws, but I keep going back to it again. No matter how much our disability may disable ourselves, I’ve yet to find an instance where society has not played a part as well. The social model prompts me to ask “How do I disable another?”"

Social Control at the Expense of Human Dignity

pseudoscience enabling social control at the expense of human dignity.

Source: Why “Middle-Grounders” May Be As Dangerous As APA Presidents

That’s what our ed-tech has embraced: pseudoscience from the 1940s repackaged by private equity. Psychiatry is at a crossroads talking about this stuff while education continues on toward more behaviorism.

This is a human rights fight. DSISD’s ed-tech choices harm and exploit us. There are better ways.

Thanks for your time,

Ryan