Showing posts with label accommodation. Show all posts
Showing posts with label accommodation. Show all posts

Parents, Do Not Infantilise Your Teenage and Adult Disabled Children

Finn Gardiner
expectedly.org

Photo © G_Jewels | Flickr / Creative Commons
[Image: Black infant in a wooden high chair,
being spoon-fed by an off-camera adult.]
If you’re a parent of a teenage or adult child with a disability, it’s important to avoid infantilising them.

What is infantilisation? It’s treating people who are no longer children like children in a way that restricts their ability to be fully integrated with their age-peers. It’s talking to them in a condescending voice, dismissing their ideas and opinions, acting as though you will always understand them better than they understand themselves, or going out of your way to shield them from everything you think may be even slightly dangerous.

Infantalisation is treating your child as though they will always be a child, whether they’re five, fifteen or thirty-five.

Infantilisation is different from recognising that disabled people have support needs. That’s part of what being disabled means: being at a relative disadvantage compared to non-disabled people because we require specific supports to help us live within the community, whether that disadvantage is related to physical health, cognition, mental health, sensory processing or perception, mobility, or something else people find disabling.

It doesn’t matter what kind of disability your child has, whether chronic illnesses and intellectual, mobility, psychiatric, learning, developmental and sensory disabilities, or a combination. People with all kinds of disabilities deserve to be taken seriously and treated with respect.

A teenager or an adult with an intellectual or developmental disability is still a teenager or an adult. Accommodating the support needs of an autistic 17-year-old or a 30-year-old with Down syndrome does not mean that you should treat them as though they’re younger than their actual age. You can support people without condescending to them.

Disabled teenagers and adults are just that: teens and adults. Teens and adults may be interested in relationships, sex, college/university, dating, alcohol, parties, mature subject matter in films, TV or books, and other activities and experiences that other people their age are interested in. Pretending that disabled teens and adults don’t have these interests does them a disservice.

If you don’t recognise your teen or adult child's autonomy, they may seek out predatory people who pretend to respect them, but who may lead them into danger because you didn’t talk to them about sex or drugs or relationships or realise that they, like other people their age, may want to try things out.

I’ve seen other disability activists, like Cal Montgomery, talk about allowing disabled people the right to experience ‘dignity of risk,’ or allowing them to try new things and potentially fail at them or learn from their mistakes. I think that’s important. Young people of all ages should have the opportunity to learn what works and what doesn’t work for them.

I understand the desire to protect one’s children from harm. If I had children I would want to avoid them from being harmed, too. Unfortunately, you can’t always control what happens to people throughout the lifespan, as much as you may try. The inherent uncertainty of life requires that parents allow their children to adapt and respond to that uncertainty. There is no such thing as a permanent cocoon, and you’ll find that your teenage or adult child is probably more resilient than you may expect. We deserve the right to try.

Infantilisation is very familiar issue to me. I myself have a developmental disability and my parents—my father in particular—infantilised me as a teenager and as a young adult. I wasn’t allowed to do what many of my peers were allowed to do; my parents claimed that I ‘wasn’t ready’ for many of the things everyone else my age seemed to be allowed to do, like going to school dances. My parents restricted what I read, thinking that I wasn’t mature enough to handle heavier themes in books, TV and films despite encountering similar subject matter in my assigned readings at school. They would force me to attend church even when I’d told them clearly that I was no longer religious; they justified this by claiming ‘in our house, we serve the Lord,’ even though I was only going through the motions of practising Christianity.

I was also a legal adult when this happened; I didn’t tell my parents explicitly that I was no longer Christian until I was eighteen. The appearance was what mattered, even if it was clear my beliefs had changed. When I was nineteen years old, my parents installed parental controls on my Windows account. (I found a way to disable them a few days after they installed these controls without their noticing, but that doesn’t excuse the fact that they still treated me like a small child even though I was an adult.) I was old enough to vote. In fact, I had voted when I was eighteen; I distinctly remember being eager to vote against George W. Bush in 2004.

My parents didn’t always give me the right to try, or if they did, they would do it begrudgingly and blame me if whatever I tried didn’t work out, instead of listening to me and working with me to identify strategies that did work for me. For them, supporting me meant controlling me.

I should also add that recognising that your teenage or adult child with a disability is, in fact, a teenager or an adult is different from using their age as a weapon against them. You can respect their autonomy and recognise that they may need support in certain areas. Just because somebody struggles with housework and certain kinds of planning, as I do, doesn’t mean that you can tell me ‘why, you’re 32! If you want to be treated like an adult, you should be able to muster up those non-existent executive functioning skills!’

Yes, I’m an adult. That doesn’t mean that I don’t have support needs. Rather, it means I should be able to share what my support needs are, and direct the means by which I receive support. Autonomy in adolescence or adulthood is about being able to make decisions about one’s own life and enlisting support to make those decisions and implement them. It is not about having to do every single thing by yourself if your disability prevents you from doing so.

Again, teenagers and adults with disabilities are still teenagers and adults. We have the right to make decisions about our lives and receive support to help us make and carry out those decisions. Having a disability doesn’t mean we’re children, or that we don’t have the right to learn by trial and error. We should be allowed to learn and grow from our experiences.

Your children are not an extension of you; they’re autonomous human beings who will eventually develop their own goals and priorities in their lives that may or may not coincide with yours. Your job is to help guide and support them, not to use them as proxies for your own desires. Respecting disabled people’s autonomy helps us live healthier, more fulfilled lives.
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Eye Contact

Beth Wilson
www.doodlebeth.com


[image description & transcription: A full-color hand-drawn comic strip.

The first row contains two panels.

The left hand panel has a green background. A blond white person on the left is talking and maintaining eye contact with the olive-skinned person with long dark hair on the right. Black all-caps hand-lettered text on a white background above their heads reads:

“For allistic people (non-autistic) eye contact is a way of connecting with others in conversation.”

The right hand panel has a blue background. On the left A black person with a natural hairstyle is looking down, with an uncomfortable expression on their face while on the right a white person with long straight hot pink hair and bangs has their eyes closed tightly. Black all-caps hand-lettered text on a white background above their heads reads:

“For autistic people, it’s different. Eye contact is uncomfortable and invasive.”

The second row is a black rectangle with white hand-lettered all-caps text reading:

“When we look away, it doesn’t mean that we are not listening. We are not disrespecting you.”

The third row is one large panel. It is a close up of the eyes and nose of a white person with straight long purple hair and bangs, with eyes wide open. Black all-caps hand-lettered text on a white background at the top of the panel reads:

“If we try and make eye contact with people, it can totally distract us from what is being said because of how horrible it can feel and the effort involved.”

Red-outlined word bubbles around the edge of the panel, in black all-caps hand-lettered text on a white background, read:

“Keep looking” “Having I looked too much?” “This hurts” “Am I doing this right?” “I have no idea what they’re saying” “Can’t do this” and “I feel so vulnerable”

All caps hand-lettered black text under the panel reads:

“© Beth Wilson 2017”

The fourth row contains two panels.

The left hand panel has a light blue background, and contains lack all-caps hand-lettered text on a white background. The text reads:

“Many of us can fake it by looking at details.”

The right hand panel has a pink background. It contains a close-up of a white person’s nose and open mouth. In the upper left corner of the panel, black all-caps hand-lettered text on a white background reads:

“Mouths”

The fifth row contains two panels.

The left hand panel contains a close up of the eye of an olive-skinned person’s wearing teal-framed glasses. In the upper right, black all-caps hand-lettered text on a white background reads:

“Glasses”

The right hand panel has an orange background. Black all-caps hand-lettered text on a white background reads:

“For others, even looking at a face is too much.”

The sixth row contains a single panel with a green background. It contains a South Asian person with short black hair on the left. They are looking at the white person with blue-and-purple layered hair on the right, while that person is looking away. Both are smiling. At the top of the panel, black all-caps hand-lettered text on a white background reads:

“When an allistic person demands eye contact from an autistic person, they are asking for something that only benefits them. Why should we experience discomfort for you?”

At the bottom of the panel, black all-caps hand-lettered text on a white background reads:

“Please respect our need to look away.”

All caps hand-lettered black text under the panel reads:

“© Beth Wilson 2017☆”]

----

This comic was originally published at doodlebeth.com.
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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.

caged
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: http://www.autism.org.uk/cjp

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.
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