Autism Grows Up: Issues for autistic adults highlighted in Radio NZ interviews.

I happened upon two interviews today, that aired on August 25th on Radio New Zealand, covering issues affecting autistic adults (in New Zealand, but it’s clear these issues are international ones too). They made up a regular segment that Radio NZ does about disability, the segment is called “One in Five.” The audio recording is 28 minutes long, do feel free to have a listen to the entire piece. What I am going to do in this post though is summarize the main points that came through the interviews, I think they are worth contemplating and sharing (and this post will take you less than 28 minutes to read, so I’m hoping those who are time-poor will at least take the chance to read this).

The first interview is with an autism advocate who has Aspergers, Matt Frost. He speaks about the need for Government autism funding to also be turned to the needs of autistic adults (ie, in addition to the current focus on the needs of autistic children). In particular, he wants to see more funding and support directed at transitioning, whether that transitioning be the classic situation of moving into work and independence after high school, or lesser appreciated areas of common transitioning (between living accommodations, for instance). Matt believes we need to be more honest about transition needs, less judgmental about those who need the help, and begin transitioning processes earlier than they currently begin.

He also argues for the existence of “community visitors” who would help bring the care and awareness and protection of the local community, into the lives of autistic adults. These people could also assist in transitioning needs.

The second – and longer – interview, is with Tanya Breen, who is a Hamilton-based clinical psychologist who frequently works with those in the legal system.

Tanya begins by debunking ill-founded myths about autistic people (and indeed, about different and disabled people more generally) been dangerous. She moves on to talking about her work in the legal system, which I found eye-opening and fascinating.

She talked about the situations where autism is or can be relevant for the legal system, for example around the question of intent where intent is part of the definition of a crime. She had some interesting insights on how autism can affect court processes, such as the providing of evidence in a court-room (eg, is it best to use a one-way screen, will the individual cope with the stress of a packed court-room), and commented on the importance of being aware of how certain questions may affect the autistic individual’s testimony and ability to testify in a court.

Tanya provided an excellent example of the incredible importance of recognizing and understanding autism’s impact on legal proceeding and evidence: The story of a person who had echolalia and would thereby repeat the last word of the sentence someone else had said every time before he spoke his own replies. This had apparently lead to a highly misleading transcript where the man was asked if the person that abused him knew the man didn’t want to engage in the activity. The sentence he was asked ended with the word “know,” to which the autistic individual responded and repeated “know,” which was recorded in the transcript as “no.” The crime at issue turned on that answer, and the answer thereby provided was incorrectly recorded and vital to the case.

Tanya also talks about and illustrates the issues with theory of mind, for example that asking an autistic adult to speculate on what someone else thought and knew, is a particularly difficult but nevertheless important task in the legal system.

She talks about how autism can affect the prison experience, and how prison routines can be a blessing for some autistic people, but the change in routine on being introduced to prison can be devastating for autistic people too.

Tanya laments the fact that there are not enough people available to do the important work she does in this area of the intersection of law and autism.

She highlights the big gap in research when it comes to autistic adults, noting that there are huge numbers of un-diagnosed autistic adults in the community, and how much we could learn from finding and researching these individuals. She says there is a lot of assumed knowledge in autism, such as around empathy and obsessions, where more research is needed, again especially for the adult population. Such research being key in courts where opinions backed by research are more important and weighty than opinions just backed by personal (albeit it professional) experience with autistic adults.

Tanya also notes that it is not true that there is a much higher proportion of autistic people in the prison population than in the community; that the proportions are pretty much equal. She also makes the important point that what we can learn about adults with autism by researching those found in prisons and institutions, is going to skew findings; again, it is important to find and talk to autistic adults living successful lives in the community, and finding out too what works for them in their lives.

I found it very interesting and educational to listen to the speakers, most especially Tanya who was a very clear and thoughtful speaker who is clearly passionate about learning more about autistic adults from autistic adults. Understanding the lives of autistic adults in the community is clearly an important and under-appreciated area of research.