Monday, April 24, 2017

What Happens to Autistic People in Prison?

What happens to autistic people in prison? We spoke with Clare Hughes, the Criminal Justice Coordinator for the United Kingdom's National Autistic Society, about the unique experiences of and considerations for incarcerated autistic people. Clare has been leading on the NAS's work expanding its accreditation programme to police forces, prisons, and probation services. Note that while some discussed issues are UK-specific, many can be generalized.

Photo © Dave Nakayama/Creative Commons license
[image: Prison cell bars, with the background cell itself slightly out of focus.]

Clare Hughes: We don’t know how many autistic people there are in prison in the UK: information about people diagnosed with autism isn’t collected routinely for the general population, let alone for prisoners, and many will be undiagnosed.

HM Young Offender Institution (YOI) and Prison at Feltham diagnose young people in the prison, if they are there long enough. In February 2016, they identified that 4.5% of their population had a diagnosis of autism, which they’d received either before or at the prison. It also requires main grade prison staff to refer prisoners they suspect are autistic.

From discussions I have had with prison governors, they don’t think that numbers of autistic prisoners are large, but the impact on the prison can be significant as they struggle to identify the best ways to support them. Some prisons are aware that autistic prisoners are spending—and often choosing to spend—extended periods in Care and Separation Units (segregation), as they are quieter environments, without contact with other prisoners.

The National Autistic Society is currently actively working with eight prisons, who have registered with Autism Accreditation. Autism Accreditation is a quality assurance programme that has been in existence for almost 25 years.

HM YOI Feltham in West London was the first prison to achieve Autism Accreditation in 2016, after we’d worked with them to develop the specialist Autism Accreditation Standards for prisons. We have since had over 30 prisons interested in Accreditation, following a letter recommending Autism Accreditation sent to all prisons in England and Wales by the then Minister for Prison, Probation and Rehabilitation, Andrew Selous MP. The Minister also asked us to look at developing accreditation standards for probation services which have done and these are currently being piloted. Following this work, we had police forces interested in the programme.

Thinking Person's Guide to Autism: Is there a sizable autistic population in UK prisons?

Autistic people can end up in the prison system, just like anyone else. Although the exact number of autistic people in prison isn’t known, in HMYOI Feltham in February last year, they represented 4.5% of the population. (Note this is an ever-changing figure, as people are released and others arrive.)

What is clear is that research has found that autistic people “represent some of the most vulnerable people in the offender population.”*

Prison governors have told me that, although the number of autistic prisoners isn’t high, they can have a significant impact on the prisons as staff struggle to identify the best ways to support them. Some of the prisons I have visited identify that autistic prisoners are spending, and even choosing to spend, extended periods in the Care and Separation Units (segregation), as they are quieter environments, without contact with other prisoners.

* Talbot, J (2008), No one knows: Prisoners Voices: Experiences of the criminal justice system by prisoners with learning disabilities and difficulties. London: Prison Reform Trust.

TPGA: Does the population the National Autistic Society works with include suspected but undiagnosed autistics?

Hughes: Our Autism Accreditation programme is designed to be beneficial for all autistic prisoners, whether they have a diagnosis or not. For a prison to be accredited, their staff will work with us to implement standards developed specifically for prisons across every area of their work, which will ultimately improve the identification and support of autistic prisoners. These changes include familiarising staff with autism, allowing autistic prisoners to use communal areas at quieter times and making reasonable adjustments to the building, such as creating areas with less clutter. The changes are all relatively straightforward but they can make a huge difference to the lives of prisoners and staff alike.

The development of the prison standards for Accreditation started in 2014 when the mental health team at HMYOI Feltham (run by Barnet, Enfield and Haringey Mental Health NHS Trust) asked if we would consider developing our existing Accreditation standards, which have been running for around 25 years. The prison had previously audited their mental health services against another audit tool, but felt that in order to provide the best outcomes for autistic prisoners, they required a specialist response and, most importantly, a whole-prison approach as autistic prisoners were affected by a wide range of issues, including the physical environment. We then worked together to develop standards relating to the custodial aspect of the prison, education mental health and primary care.

As part of this, we also looked at a thematic review that had been carried out by Her Majesty’s Inspectorate for Prisons and Probation in relation to the treatment of prisoners with learning disabilities and/or autism in the criminal justice system and incorporated their recommendations, particularly around improved communication, which will, of course, benefit to anyone with communication issues.

The then minister, Andrew Selous, heard about the work taking place at HMYOI Feltham and visited to learn more. Following his visit, he wrote to all prison governors across England and Wales, encouraging them to consider Autism Accreditation. Feltham has since become the first prison or YOI to be accredited, and the project last year won the Royal College of Speech and Language Therapists’ Sternberg Clinical Innovation Award. This was shared between project partners Barnet, Enfield and Haringey Mental Health NHS Trust (who provide the mental health services at the prison), the National Autistic Society (NAS), and HMYOI Feltham. We’ve also had another 30 prisons and YOIs contact us to express interest in Autism Accreditation and are currently working with eight of them, including Feltham.

TPGA: Do you know if the proportion of incarcerated autistics is similar in other countries?

Hughes: We are no aware of any definite prevalence data about any prison population, nor how this compares to the UK.

TPGA: Does being autistic affect one's chances of being incarcerated? If so, why?

Hughes: The vast majority of autistic people are law abiding and respect the rules of society. Indeed, in many cases, autistic people are unusually concerned to keep to the letter of the law.

But there are of course cases where autistic people, like anyone else, can commit a crime. There are also cases where someone's autism may have a bearing on their behaviour. For instance, autistic people can have difficulty understanding unwritten social rules or how the world works, which can leave them open to being taken advantage of by others (Autism Together have been running a campaign around this so-called mate crime).

Autistic people can also be misunderstood by professionals within the criminal justice system, which is something I’m trying to change in my work. There’s a tendency, particularly in relation to some serious crimes including terrorism and sexual offences, for criminal justice professionals to interpret ‘odd’ as ‘dangerous,’ which may bring autistic people into contact with the criminal justice system or to their behaviour being seen as more serious in its intent. For example, if someone commits an offence related to a special interest, they may speak about it in great depth and passion when asked, leading people to think they are cold and calculating. Likewise, many autistic people struggle with eye contact and this can be interpreted as having something to hide.

More and more professionals are starting to understand more about autism and the different ways autistic people may respond to situations. This should help prevent people’s behaviour being misinterpreted and lead to better responses to divert autistic people from offending, or improved programmes to help prevent further offending.

TPGA: What kind of problems do autistic people encounter in prison that tend to be specific to their disability?

Hughes: Autistic people can have extreme sensitivities to things like light and sound, so the often busy and loud prison environment can be a real challenge. Prisoners shout to other prisoners, prison officers shout to prisoners, prison officers shout to other officers, there is the sounds of keys jangling, heavy cell doors being banged, an almost constant smell of cleaning products, strong smell of food at mealtimes, and minimal natural light. All of these can be incredibly challenging for autistic people, especially as there’s nowhere to retreat to.

However, there are other elements of prison that work well for autistic prisoners, who can struggle with change and seek out routine. Prison life is very structured and fairly predictable, with everyone receiving a set of rules when they arrive and seeing the same faces each day. But a sudden break to this routine, can be really hard for autistic prisoners. For instance, if there’s an unannounced cell search or an incident.

Rules aren’t always adhered to as rigorously as some autistic people would like to see and there are times when they may become confrontational with others about this. It’s a unique experience to have written rules of what is expected of you and others and, understandably, it’s really difficult for autistic people where others don’t stick to these rules.

There are ways to help autistic prisoners to cope with these challenges, which is something we make clear in our Autism Accreditation work. Some prisons are beginning to provide information to prisoners explaining that these sudden disruptions can happen, what the process will be before, during and after, and why staff will be unable to tell them when and why this is happening. There will still be autistic people who will be very anxious about this, but their anxiety will be reduced by having prior knowledge that this kind of thing happens and what the process is and, wherever possible, trained staff who understand how challenging this is for them.

TPGA: Are there some situations in which autistic prisoners' experiences are, relatively, not entirely negative, with regards to providing routine, etc?

Hughes: There are elements of prison that work well for autistic prisoners. Prison life is structured and fairly predictable, with everyone receiving a set of rules when they arrive and seeing the same faces each day.

I’ve also seen first-hand how understanding and support from prison officers and staff can transform the lives of autistic prisoners. For instance, there was an autistic man, who also had OCD and ADHD, in one of the prisons that I worked in. When he arrived, staff didn’t fully understand what any of those acronyms meant, but they knew that he was vulnerable. They provided a support system around him made up of other prisoners and prison officers and saw a real change in his behaviour. The autistic man even said that prison had been the best thing that had happened to him. I have met some incredibly passionate prison officers who want to learn more about autism and the best strategies for supporting people in the prisons that they work in.

TPGA: Do you see many cases in the UK similar to that of African-American autistic Neli Latson, whose arrest and incarceration were largely due to lack of supports and understanding about autism?

Hughes: This is a really shocking case. While it’s in the US, which has a different criminal justice system to the UK, and we’re not aware of such a serious UK case, Neli Latson’s experiences do highlight how autistic people can get caught up in the criminal justice system and how misunderstandings around autism can escalate things. This, and other cases in the UK, demonstrate why it’s so important that the police and other criminal justice personnel have autism training. This would help them to understand the additional communication challenges faced by autistic people and how to prevent escalation.

The NAS has also got lots of information for autistic people and criminal justice professionals on our website, including tips and guides:

TPGA: What kinds of practices and policies would you like to see change, for the well-being of the autistic people in question?

Hughes: The most important change would be to have autism training delivered as a matter of course to all staff working in the criminal justice system, from police and courts to prisons and probation.

We’ve shown how this can work, through our project at HMYOI Feltham and early work with police and probation services. A growing number of staff are also calling for this too as training has a significant impact on their ability to carry out their role. It’s important that each of the agencies share this information with one another too, so they can learn and spread best practice.

Quality standards like Autism Accreditation can also help ensure that there’s the best possible autism practice relevant to each criminal justice agency.

We also believe that there need to be more specialist programmes to divert autistic people from committing offences, sometimes unwittingly, and where they have offended, to prevent re-offending, which understand the particular motivations and communication styles of autistic people.

Monday, April 10, 2017

Hey Parents of Autistic Kids: Here Are Five Big, Avoidable Mistakes

Shannon Des Roches Rosa

Resting after a long hike. Photo © Shannon Des Roches Rosa
[image: White teen boy with short brown hair, seen from
behind, sitting on a hilltop bench overlooking an ocean.]
If you're the parent of an autistic kid, you probably get advice thrown at your head from every angle, all day long. You may even be all done with advice. And I hear you, because I am you.

But I also have had the great good fortune to be connected with some of the most insightful autistic and autism professionals and thinkers on this planet, who have transformed my parenting approach completely, and to the benefit of my teen son Leo, as well as myself. 

As I have become increasingly devoted to "learn from my mistakes, so you don't repeat my mistakes," here are five bonks I made during the early years of parenting my autistic son, and how you can avoid repeating my fails:

1) Focusing on Awareness Instead of Acceptance

Autism acceptance wasn't a thing in the American culture in which I was both raised and taught to parent. Americans tend to think of autism and disability as either other people's problems, The Worst Thing That Could Ever Happen to a Family, or grist for arguments that non-disabled people should appreciate their special non-disabled lives. Even respected progressive media outlets tend to take these stances. 

Parents like me are told we need to focus on building awareness, which means opening  other people's minds to the concept that autistic people like my son exist. Which would be fine, if awareness also came with the benefits of respect and understanding.  But it doesn't. "Awareness" lets people think it's OK say ignorant things like, "Oh, I heard you can cure autism with a bleach enema," or "I'm so sorry about your son's autism epidemic," or even "Aren't autistic people all violent psychopaths?"

Awareness underlies misunderstandings such as assuming autistic people are either all children, or remain children for life. Which then leads to autism efforts that neither include nor consult autistic people, plus parents or professionals feeling entitled to able-splain "what autism is really like" to ... autistic people. These too-common results are the opposite of helpful.

Awareness also doesn't prevent innocent autistic people like toy truck-holder Arnaldo Rios from being mistaken by police for a violent suicidal gunman, nor does it prevent autism professionals like Arnaldo's caregiver Charles Kinsey from being shot for trying to comfort an agitated autistic person while Black.

These are just a few of the reasons why parents need to work on autism acceptance, on helping not just our own selves but the whole damn world understand this truth: our autistic children have autistic traits that make them autistic, and they are also real human beings with real needs who deserve real respect. Real acceptance means supporting and accommodating our autistic kids without being hellbent on "fixing" them, and being conscious of “the law of expressed emotion,” as described in the recent Invisibilia podcast, The Problem With The Solution, that “our private thoughts about a person, our disappointment in them or even our wishes for them to get better, shoot out of us like lasers and can change their very insides.”

Acceptance means rejecting the idea that there's a "normal" child trapped inside your autistic child, for the sake of your child's health, heart, and soul—as well as your own. It is reasonable to want your child’s life to be easier, and work towards that. On building skills for better coping with people and situations that are rarely considerate of autistic needs. But if you have an autistic child, it isn't realistic or healthy to expect them to not be autistic.

2) Obsessing Over "Age-Appropriate" Interests


It should be fine and dandy for people to like what they like, as long as they're not hurting anyone. Unfortunately, when it comes to autism, things people really really like tend to be viewed solely through the lens of disability, if not pathology: what might be viewed in a non-autistic person as a passion becomes an "autistic special interest." And woe to the autistic person whose passions are seen as only appropriate for younger people!

This is part of that acceptance mindset again: parents need to jettison worries about autistic kids' interests being age-appropriate and focus on what, for your child, is happiness-appropriate. Otherwise, you'll not only make your child sad and possibly even miserable, but you could be destroying opportunities to connect with them. In the new movie Life, Animated, an autistic young man's love of animated Disney movies gave him scaffolding not only for making sense of and relating to the world, but provided him with scripts—functional echolalia—to communicate with his delighted family (who had been told by professionals that his echolalia served no purpose, grrr). 

With people like my son Leo, for whom speaking comes slowly and carefully, building language skills requires extended observation, absorption, and scripting. Sometimes he needs to practice hundreds or thousands of times before feeling comfortable trying new words, and watching familiar videos or scripts (and yes, even ones meant for younger kids) can help with that. My son says novel things about videos he’s watched thousands of times before, almost every day. Why would I tell him he can't watch what he loves, when his favorite videos continue to help him learn?

3) Making Everything Therapeutic. Even Fun Things.

I have been guilty of this in the past (and possibly in the paragraph directly above): making sure that everything in Leo's life has some sort of therapeutic value, instead of making sure he has space in his life for happiness and fun. I recently observed this type of "what is awesome for non-autistic people is therapeutic for autistic people because they are autistic" with Pokémon Go:
“A mum has described how Pokemon Go has helped her autistic son leave the house and socialise with other people for the first time. She hopes that the effects of the game will carry over into the rest of his life, with Ralphie becoming more social, less rigid and wanting to get outside. "We're letting him enjoy the game but we're also trying to help him learn he doesn't need the game in order to do those things," she said.” 
As parents, we need to be really careful to distinguish between "this thing is making my kid be the person I want them to be but they aren't," and "this thing is making my kid happy and making it easier to do things that are hard for them." Let your autistic kids have fun, people!

4) Assuming Speaking Is the Only Form of Legitimate Communication

This is an intense one. And one that makes me so sad. I hear from and read accounts from parents nearly every day, talking about their "non-verbal" kids, about how speech therapy never worked, about how they can't reach their kids and how it makes those parents so sad.

I'm guessing it makes their kids even sadder. Especially if their kids have never been given communication options other than oral speech. Because not only can everyone communicate (even if it's as basic as yes/no, or even just "no") when given the right tools to do so, many autistic people have motor planning or related disabilities that make it hard to speak or respond appropriately even if they understand everything being said to them.

So if your child needs communication support, be sure to press hard for alternative communication evaluation and options. If your local resources or school district don't know where to start, send them to the website PrAACtical AAC, which is dedicated to best practices for Augmentative and Alternative Communication (AAC) professionals, and which you should read through yourself for ideas.

5) Buying Into the Stereotype That Autistic Kids Aren’t Empathetic or Social 

It is extraordinarily damaging to treat autistic people as emotion-free, antisocial robots. As Louise Milligan writes in The Guardian,
"The idea that people on the autism spectrum don’t know or care about other people is offensive and wrong. It makes their ability to navigate a path through this world so very vexed. Let’s be very clear: how people with autism might appear in company and what they know or think about, or care about, are quite distinct things."
And this goes back to that Acceptance concept: If you understand that being with other people can be challenging for an autistic child because social cues are confusing, and the world is filled with “light, colors and noises so intense” that your child can't think let alone interact, then you're more likely to stop confusing inability to handle socialization under stressful circumstances with dislike for other people.

(Though, to be fair, as with non-autistic people, some autistic people do prefer their own company.)

What Can You Do? Just Keep Swimming.

How can you get it right? Well, I recommend acceptance, as you might suspect by this point. And learning from the parents in the movie Finding Dory. As Alice Wong writes, "[Dory's parents] Jenny and Charlie are like many parents of kids with disabilities:

"They worry about her future
"They teach her life skills that she will need
"They are protective about Dory and her safety (“Watch for the undertow!”)
"They show joy and love of Dory being Dory"

Some autistic people, as well as people with other disabilities, say Finding Dory is hard to watch, because they lived through and so deeply empathize with how other creatures shun and second-guess Dory, and condition Dory to constantly apologize for existing. But Dory's parents never wavered in their complete love and acceptance for her.

Be like Jenny and Charlie. Love your kid. Let your kid know you love them, and are on their side -- no matter how badly the rest of the world behaves. Let them know they can always depend on you, that you accept and adore them, and that anyone who doesn't automatically feel the same way just needs to catch up. Because if we all work hard enough on that acceptance thing ... maybe everyone else actually will catch up.

A version of this essay was previously published at