Tuesday, May 9, 2017

Autism and Suicidality: Conversations Between Researchers and Autistic People

Sadness
Photo © Gayan Gunawardana | Creative Commons
[image: Backlit photo of a sad ponytailed person
with their head down, in profile in front of an
ocean sunset.]
Dr. Sarah Cassidy co-chaired a SIG (Special Interest Group) on Autism and Suicidality at IMFAR 2016, in Baltimore. We weren't able to attend her session, but Dr. Cassidy was kind enough to take time, later that same day, to talk with TPGA editors Shannon Rosa and Carol Greenburg, autistic autism researcher Dr. Steven Kapp, and Autistic Self Advocacy Network Executive Director Julia Bascom. The following is a transcript of our conversation.

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Shannon Rosa: Tell us about what you discussed in the SIG. What has your research revealed about suicidality in autistic people?

Dr. Cassidy: We’ve published two studies so far. The first study we did, which is free to access in the new Lancet (Psychiatry) journal, was a medical chart review, a type of data mining, at the Autism Research Center, Cambridge University, UK. It had a clinic called the Cambridge Lifetime Asperger’s Service (CLASS) Clinic, which was set up by Simon Baron-Cohen, and specialized in the diagnosis of Asperger’s in adulthood.

The clinicians collected a lot of data from individuals before they went though the diagnostic appointment, such as:
  1. Have you ever contemplated suicide in your lifetime
  2. Have you ever planned or attempted suicide in your lifetime
  3. Have you ever been diagnosed with depression.
Everyone seen over a nine-year period was asked these same three questions very consistently. They also completed the AQ and EQ questionnaires.

When we analyzed all the data, we found 374 people had been diagnosed with Asperger’s syndrome, and out of those individuals, 66% had self-reports of contemplating suicide at some point in their lifetime. In the same group, one third had planned or attempted suicide in their lifetime, and about another third had been diagnosed with depression.  

That depression diagnosis was a significant risk factor in planning or attempting suicide, or suicidal ideation—those who had a diagnosis of depression were at significant risk for both those factors.

While everyone in the group had a diagnosis of Asperger’s, those who had planned or attempted suicide also had significantly more self-reported autistic traits than those who didn’t.

Carol Greenburg: I have a question, and I’m not quite sure how to ask it. How can you differentiate between an actual attempt at suicide, and an overdose that happens because of an autistic person’s medication not being properly monitored? Do you control for that?

Cassidy: I think that’s a really excellent question. In this particular study, which was retrospective, we just asked one question—one self-report question—which was “have you ever planned or attempted suicide in your lifetime?”

So it wasn’t looking at “completed” suicides, where you’re not sure if it was an accidental overdose or it it was deliberate. And this was self-report. I think that’s a real challenge, for coroner studies, or studies of “completed” suicides. In the UK, those kinds of suicides are recorded as “open verdict.” We don’t know unless they leave a note.

Greenburg: That’s what we have in the U.S., too; they say that it was not possible to determine whether it was an accidental or deliberate overdose.

Steven Kapp: I’ve seen in many studies that higher numbers of autistic traits, whether in adolescents or adults, or perceived differences from typical peers, or attributing social difficulties to oneself—any way you slice it—exposure to normalization attitudes is usually related to higher rates of depression, and anxiety, and internalized ableism. We did find this even in a self-reporting using an online screener, that a higher level of  autistic traits was related to lower self-endorsed quality of life, and a feeling of disempowerment. Because the stigma is still so high, and there are still so many forces against you, that people might not be disclosing even if they’re relatively comfortable with who they are.

Cassidy: The 66% rate of depression of autistic people in our study was higher than those in other studies, higher than the 59% rate in a sample of patients diagnosed with psychosis, and significantly higher than people diagnosed with one or more medical illnesses, significantly higher than the UK general population, where a similar self-report questionnaire was used, and where the rate is 17%.

Julia Bascom: What are the next steps, in terms of supports and prevention? What did you talk about during the SIG?

Cassidy: It was really eye-opening to hear from autistic people and family members, and quite hard-hitting as well. Because a lot of the limited research, which is really only about eight studies looking at suicidality in adults, adolescents, and children with autism, are usually only counting studies about prevalence, about “how common is it?? But nothing about how does it develop, what are the family experiences and dynamics. What are the interventions we can do now? It’s not enough to talk about rates. You can have as many counting studies as you want, but knowing that the rate is high doesn’t really tell you what to do about it, especially in the short term.

We need to know what the risk factors are, whether there are protective factors? What is the difference between people with autism who experience suicidality and those that don’t, and how does that compare to the general population?

What really came out of the study is that we need some short-term goals, right now, and to come up with useful guidelines for parents and clinicians who are trying to help people experiencing these difficulties.

What was really great is that there were people at the SIG who had access to really big research databases like the Interactive Autism Network, ones in Newcastle and Cambridge, and Swedish databases. We talked about sharing out expertise, and actually do a qualitative survey targeting parents, young people with autism, and adults with autism—and asking them “what kind of supports do you actually need? What would help you, if you were experiencing these kind of difficulties?” So we could try to make recommendations about what the next steps could be, and interventions or preventative measures or supports we need to develop.

Another thing we discussed during the SIG was sharing data. In our study, we have a short set of questions that could be collected routinely in all of the studies that we do, so we could put data together and look at a variety of factors. Things like quality of life are really, really important. And there is really exciting work going on, in developing quality of life measures specifically for people with autism, and the unique challenges that they have. So if we provide these quick questions to go with it, we’d be able to directly compare and pull resources, and ideally untangle some of the causatory factors.

The last thing that came out, because there are lots of research questions to sift through and get feedback on, but another thing we really want to do is to run a seminar series. In the SIG we only had 1 1/2 hours, and could only scratch the surface. So we want to hold a seminar series in the UK, try to get funding for that, and invite people from Canada, Sweden and other European countries, The US, involving autistic people, families, funders, researchers, clinicians who are interested in this topic. I want it to be like the SIG, involving lots of different stakeholders, because it’s really important to include everyone involved when talking about next steps and research priorities.

I think we’ve done as much as we can with the prevalence and counting studies; we need to go a bit further and ask what we’re going to do about it, what is the response going to be, and how can we pull resources so we don’t waste time doing more of the same? So we can do something useful?

Bascom: Was there any discussion (in US or other countries) of where to find supports and resources for people with developmental disabilities and communication disabilities (autistic or not)? Because this is a huge problem—it’s very difficult to find mental health providers for people with developmental disabilities, especially if they’re autistic, especially if they also have intellectual disability, limited speech, or don’t have a good communication system. As an advocacy organization, ASAN considers this area really important, but we often feel like our hands are tied because people will come to us, and ask for resources—and they just don’t exist, because the providers don’t exist. Was there any discussion about how these factors might be affecting the numbers?

Cassidy: What we did discuss—and it was to do with preventative strategies, interventions, and treatments—is trying to improve experiences of hospitalization. There was talk of doctors or clinicians overreacting, and over-intervening, or not knowing how to intervene. We need those guidelines, and there’s so little research on it. Just taking simple steps, like using the NAS hospital passports that give out information like:

  • This is what my pain threshold is like
  • This is how I prefer to be communicated with
  • I’m verbal/I’m not verbal
  • These are my interests
  • This is how you talk to me

And things like that. Also training health providers that they need to provide structure, they need to provide a bit more explanation, a little bit more processing time. Or they have to be aware of really literal interpretations. Just small things like that can make peoples’ experiences with health care scenarios so much better.

But we do need to have a research study, because most of this is anecdotal, from discussions with clinicians experiences with people with autism coming in, and they’re not to sure how to deal with them. And then there are other clinicians who are really excellent, who really do have experience in autism. But it’s not consistent.

Bascom: In the States, we have this huge gap between autistic people who need services and providers. You find people, like primary care providers or therapists, who don’t necessarily have autism training but are good with autistic people—and then people find out about them and then they’re overloaded and can’t take more patients. We have an association, The NADD, that tries to be specifically for people with autism and developmental disabilities who need mental health support, but it’s so tiny, because there just hasn’t been funding for the training, and providers often think accommodating autistic patients is going to be a lot more complicated than it is. There’s a lot of room for specific training, but we certainly don’t have any large US organizations who are trying to do anything like the UK’s NAS Passport yet. ASAN helped AASPIRE develop a customizable healthcare toolkit, and it’s great, but it hasn’t gone to scale in any meaningful way. So it’s interesting to hear that that’s what you’re looking at, as well.

Cassidy: NAS Wales had a great, very customizable toolkit. You go to the website, and you can click on different kinds of difficulties, and you can put in picture symbols.

The UK overall is evaluating the effectiveness of the passports, in terms of what’s the uptake, and what’s the experience of using it.

Bascom: There are people who are going to need specialized expertise. People who, for instance, are autistic and have communication disabilities, and they don’t have good access to AAC, and they have challenging behavioral issues—there are very few practitioners who even know where to start. Which is frustrating, because we know mental health disabilities are underlining a lot of what is going on, though that’s also kind of a separate population from what you (Dr. Cassidy) are talking about, I think. Or maybe there’s an assumption that it’s a separate population. It would be good to know how many of those kids grow up into suicidal adults.

Shannon Rosa: If you’re never accommodated, or understood…

Bascom: I can think of several people I know, who were that way as kids. And now as adults, they seem to be doing a lot better. But when you pay attention to their mental state, it’s a lot more dangerous than maybe when they were a little more open about what they were feeling.

Cassidy: We have a group of adults with autism who experienced suicidality, and they are helping us design a survey that goes into more detail, about the issue of lack of supports, and different kinds of difficulties and what causes them. One of them is a parent who has a diagnosis herself but also her son has a diagnoses. And she was saying similar things to what you (Julia Bascom) are saying, in looking back at the lack of supports throughout. I think it does take its toll, and we’re going to explore that a bit more.

My work is just for adults, but we need to expand it somehow, to look at children, and that developmental pathway. Or following up autistic children, because there are a lot of cohort studies in the UK and overseas, and making sure people include those questions and look at those things is going to be really important.

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Dr. Cassidy will be co-chairing another SIG on autism and suicidality at IMFAR 2017.

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SUICIDE RESOURCES

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

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

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