Tuesday, May 8, 2018

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.


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!

Monday, May 7, 2018

#AutINSAR Twitter Chat 2018: What Autistic People Want From Autism Research

What do autistic people want from autism research? And how can we convey these concerns to autism researchers? That is what #AutINSAR is all about: a conversation between autism researchers and autistic community members, both in person and on Twitter.  We had a fantastic conversation last year at IMFAR 2017 in San Francisco, and are hoping for another fruitful discussion this year at INSAR 2018 in Rotterdam.

We are once again partnering with 
The Autistic Self Advocacy Network (ASAN)NOS MagazineAutism Women and Nonbinary Network (AWN), and autchat. We are also welcoming new partner We Are Like Your Child.

image: The Twitter logos for five organizations: autchat: a rainbow background with a black infinity symbol and black text reading: "#autchat"; The Autistic Self Advocacy Network: a spiraling rainbow heptagon on a white background; Autism Women's Network: a pink lowercase "a" overlaid on a light-blue-and-brown illustrations of dragonflies and flowers, above the lowercase black text "autism women's network"; NOS Magazine: a black circle on a white background, with an illustration of an incandescent light bulb drawn in white and surround by a sunburst in dashed rainbow colors; and Thinking Person's Guide to Autism: All-caps black text on a white background reading "Thinking Person's Guide to Autism," with "Person's" in white text on a black arrow.
#AutIMFAR Partner Orgs: autchat, ASAN, AWN, NOS Magazine, and TPGA
(Not pictured: We Are Like Your Child)

[image: The Twitter logos for five organizations: autchat: a rainbow background with a black infinity symbol and black text reading: "#autchat"; The Autistic Self Advocacy Network: a spiraling rainbow heptagon on a white background; Current Autism Women and Nonbinary Network logo: a pink lowercase "a" overlaid on a light-blue-and-brown illustrations of dragonflies and flowers, above the lowercase black text "autism women's network"; NOS Magazine: a black circle on a white background, with an illustration of an incandescent light bulb drawn in white and surround by a sunburst in dashed rainbow colors; and Thinking Person's Guide to Autism: All-caps black text on a white background reading "Thinking Person's Guide to Autism," with "Person's" in white text on a black arrow.]
Autism research tends to focus more on causation and cures than on helping existing autistic community members. From both practical and basic rights perspectives, this needs to change. Too many core matters affecting autistic people's health and quality of life are still under-researched, and, as a result, proper supports and understanding are too often lacking. The #AutINSAR discussion hopes to help autism research better serve the interests of autistic people, and more fully address the research matters autistic people want addressed. 

With this in mind, #AutINSAR is meant to connect autistic communities with autism research communities directly, during INSAR, the International Meeting for Autism Research. Such conversations don't happen often enough at INSAR due to a variety of barriers: cost, sensory bomb conference environment, having to face people who don’t see why they shouldn’t aim to cure or normalize autistic people, travel stress, etc.
 

If you are an autistic person who is interested in autism research and/or an autism researcher, we hope you will participate in this year's #AutINSAR.

#AutINSAR Details
  • Friday, May 11
  • 5:30 - 6:30pm GMT+2 (Rotterdam, INSAR conference Press Room)
  • 11:30 - 12:30 ET
  • 8:30 - 9:30am PT
How to Participate
  • If you're at the conference and want to join the in-person discussion, come to the INSAR Press Room. Otherwise, participating via Twitter only is just fine.
  • Follow the Twitter hashtag #AutINSAR. Alternatively, Twitter chat platforms like TweetChat and Twubs can simplify following hashtag-based conversations. 
  • Questions will be asked as "Q1" etc; please answer using "A1" etc.
  • The chat is intended to be between any autistic individual (including self-diagnosed) and/or autism researcher who wishes to participate, as much as anything on Twitter can be controlled (popular Twitter chats are sometimes targeted by Twitter Bots of Dubious Nature). 
  • If you are a friend, parent, non-researcher autism professional, ally, or other party interested in autism research, we encourage you to RT as much of the chat as you’d like (thank you!). 
  • We ask that participants abide by TPGA’s community guidelines, the short version of which is: It is OK to disagree, but not OK to insult those with whom you disagree: www.thinkingautismguide.com/p/community-guide.html.
  • Ideally, chat participants should be familiar with last year's AutIMFAR discussion: http://www.thinkingautismguide.com/2017/05/autimfar-chat-at-imfar-2017-towards.html
  • And also aware of the research being presented this year at INSAR 2018: https://insar.confex.com/insar/2018/webprogram/start.html  
  • Participants can also follow the Twitters stream of the INSAR conference itself, at twitter.com/hashtag/INSAR2018.
  • And apologies to those outside our time zone or who are not able to participate for other reasons; we will publish a transcript of the #AutINSAR chat.