Following on from the announcement of the delivery partners in July of this year of the Oliver McGowan Mandatory Training in Learning Disability and Autism for Health and Social Care Workers, there has been a process by which Autistic representatives were able to apply from the NHS England Learning Disability and Autism Advisory Group to join the Strategic Oversight Group led by Skills for Care, Health Education England, and the National Development Team for Inclusion.
After an application and interview process, Autistic UK is proud to announce that one of our Directors, Julian Morgan, as a member of the NHS England Learning Disability and Autism Advisory Group and the NHS Citizen’s Advisory Group, was appointed as one of two independent Autistic members of the Strategic Oversight Group.
Julian will be attending his first meeting of the Strategic Oversight Group at the end of October, and is looking forward to being able to put our wider Autistic community’s views and concerns forward to those responsible for its implementation and evaluation.
To this end, Autistic UK will be continuing its focus groups and surveys so that Julian is fully informed and up to date with the wider Autistic community’s wishes and concerns. Through this we hope to ensure that your voices are heard directly by those who need to hear them. Our next survey will be shared across our platforms in the next few days, with the questions being based on the answers received in our initial survey. The report generated from our initial survey has been passed on to the Implementation and Evaluation Partners via NHS England.
As one of Autistic UK’s founding principles is that we do not seek to speak for Autistic people but provide a platform for their voices to be heard, we encourage all of you who read this to grasp this opportunity to have your views put before those decision makers responsible for the creation, implementation and evaluation of the Oliver McGowan Mandatory Training in Learning Disability and Autism for Health and Social Care Workers. In turn, we will also use the discussion points from the Strategic Oversight Group meetings to inform our future survey questions. In particular we are seeking answers from those whose voices are normally not heard, especially those of you who also have a learning disability and those with high support needs.
We will also be putting out surveys which focus on intersectionality, for example, LGBTQIA+ and Black and other Ethnic Minority communities. This is to ensure that health and social care inequalities faced by those further marginalised groups are specifically highlighted, and that feedback isn’t based on one subsection of the Autistic community.
This will also include input from the official partners regarding the areas which they would like to consult with you on, which should give our community an idea of their understanding and focus. These will always be put out separately and be clearly identified as questions being asked by those organisations. Please be assured that all of your answers to these questions will be passed on anonymously, but word for word.
As ever, the results of all of these surveys will be published on our platforms as soon as they are available.
This article was written collaboratively by Julian Morgan and Kat Williams
To start, Autistic UK would like to add a grateful acknowledgement of ALL those of us who have been pushing, campaigning and demanding formal learning disability and autism training to be nationally available. The announcement made today that all health and social care staff in England will receive mandatory autism training is the outcome we were all rooting and campaigning for, and is – on the surface – a huge step in the right direction.
But as ever, the execution from the NHS and Government never fails to disappoint.
Though medics may not be required to take the Hippocratic Oath, the statement “first do no harm” should still apply. The Oath was replaced by the General Medical Council’s (GMC) “duties as a doctor,” which many universities use as part of their medical graduation ceremonies as a ‘pledge’ to uphold, and all doctors must adhere to.
Now the Autistic community in England (not the UK as headlines suggest) finds out the ONLY autism related organisation that will be implementing ‘Oliver McGowan Mandatory Learning Disability and Autism training for all health and social care staff’, as announced, is one which has a history of exploiting those Autistics who contributed to its past online training packages. It’s also rather short of paid Autistic employees too; unpaid ‘volunteers’ and ambassadors it has in multitude. Other contributors include learning disability charities – all of which are parent focused or led – and this news has sparked a high level of concern within the Autistic community.
The “duties as a doctor” states that medics should “Never abuse your patients’ trust in you or the public’s trust in the profession.” Handing a training contract over to a parent-focused charity with such an atrocious history of death and neglect in their own care homes has deftly broken that trust in one fell swoop.
Medics must “Listen to, and respond to, their concerns and preferences,” yet they refuse to listen to the Autistic community who, for years, have been telling them that training should be directed and delivered by Actually Autistic people who have lived experience. The NHS employs lived experience advisers in many areas, yet autism seems to be a category in which “mother knows best.”
One of our Directors – who also sits on the NHSE Advisory group on Learning Disability and Autism – was promised that the NHS-wide training on autism and Autistic people would be co-produced and developed by lived experience advocates. Were they actually listening, or just saying things they thought we would like to mollify us?
They promised that what we referred to as ‘The Usual Suspects’ would not be their go-to choice for autism as they were heavily biased in their experience towards learning disabilities, and had no real experience of Autistic people other than ‘as learning disabled’ and were wedded to the medical model of care.
‘NO!’ they said, ‘Local implementation! Lived experience all through. Not all learning disability charities doing it…’
Despite promises to stop the standard practice of treating Autistic people as learning disabled, we now have a selection of learning disability service organisations telling medics and care staff what Autistic people need, without any meaningful Autistic consultation or input. We asked for separate, independent, Autistic advocates and organisations to be included in designing the bid and training, yet the infantilising of Autistic people (especially those with learning disabilities) means that it is presumed we are unable to know what we need and desire, let alone deliver this training ourselves. Of course, our betters know better than we do about what Autistics want.
The NHS has broken its pledge that ‘lived experience advisors will be used in all decision making and implementation processes in all areas.
What happened to Nothing About Us Without Us?
The chances of Autistic people who do not “toe the line” with the service provider in question contributing to this massively important work, has basically slipped to zero. Thanks NHS and Government. Notice how Autistics do not even make the headline on this official announcement from a national provider to the Care Industry?
The GMC’s duties of a doctor also states that they must “Work with colleagues in the ways that best serve patients’ interests.” We’re going to go a little off the path with this one, but realistically colleagues does not solely include other doctors. This includes the trainers, the administrators, the managers etc. Working with trainers who have demonstrated that they do not serve Autistic patients’ interests, yet again, goes against this ethical guidance.
Medics must also “Protect and promote the health of patients and the public.” They cannot protect the health of Autistic patients while simultaneously working with an organisation which has actively harmed Autistics, particularly as they then attempted to cover up said harm. Do they think we have forgotten Mendip House? Forgotten the cover up? This is especially pertinent as the NHS and Government’s working relationship involves them teaching medics and care staff how to better care for a portion of society they harm.
How do you feel about an organisation that still sends schoolchildren to secure units and ATUs telling care staff how to look after autistic children and adults?
Have you forgotten the whistle-blower(s) and the denials of responsibility?
Do they think we have forgotten the abuse?
Does their track-record demonstrate that they’re up of this job? That further deaths will be prevented?
This is the organisation that will now train others to care for YOUR loved ones. A fine example of vanity and hubris above and beyond the call.
This organisation veils itself using the Social Model of Disability in its public image, yet follows the Medical Model of Disability behind closed doors. The thought of an organisation that treats the Autistic community as an income stream is not representative of that community. Its unwillingness to advance the Autistic cause through meaningful coproduction (rather than public-facing tokenism) is chilling. This is an organisation that practices ABA (as are the others which are involved). This organisation incarcerates children and abuses its charges. The NHS has already had ABA/PBS snuck through the back door through the Transforming Care Programme, and this new contract will see systems that Autistics have been campaigning to reform move back into behaviour-led thinking led by organisations whose training will be coloured by their own negative opinions.
The GMC code also states that medics must “Take prompt action if [they] think that patient safety, dignity or comfort is being compromised.”
Therefore, to the NHS and Government, we invite you to take prompt action now. Your Autistic patients’ safety, dignity and comfort are all being compromised with this union.
“You are personally accountable for your professional practice and must always be prepared to justify your decisions and actions…” Can you justify this?
Feel free to express your opinion to the National Autistic Society, Mark Radford at Health Education England, NHS England, and Minister for Care Helen Whately.
Today (11th July 2020) is World Population Day which “this year calls for global attention to the unfinished business of the 1994 International Conference on Population and Development” (ICPD).
The ICPD met in Cairo in 1994 and 179 governments adopted a Programme of Action relating to reproductive health and the empowerment of women. ICPD is “often used as a shorthand to refer to the global consensus that reproductive health and rights are human rights.”
[Before I continue, I’d like to thank Hayley Morgan for her guidance and direction to some of the only academic articles out there regarding this matter.]
Despite this consensus, many Autistic women (and those non-binary and otherwise gendered people who have given birth), report that the support (or lack of) they received during pregnancy and birth from their medical teams was not reflective of their needs. A study of women with intellectual and developmental disabilities conducted in 2015 by Potvin, Brown and Cobigo found that a “high level of available support was not always perceived as beneficial” and that “social support is perceived as most effective when three conditions are met: (1) support is accessible, (2) support is provided by individuals expressing positive attitudes towards the pregnancy, and (3) autonomy is valued.” The study concludes that there’s a lack of accessible information for developmentally disabled women, and that maternity care providers should “be aware of stigmatizing attitudes and respect the autonomy of pregnant women with IDD as they prepare for motherhood.”
For pregnant Autistics, not only is there a lack of accessible information for those who need it, there’s a lack of information full stop. If you Google ‘pregnant and Autistic’ or ‘Autistic pregnancy’ the results include a plethora of articles speculating about whether or not you can ‘prevent autism’, articles listing the ‘risk factors for having an Autistic child’, a small handful of academic research papers which are often behind paywalls, and (from the first 10 pages of the Google search results) a couple of articles containing the experiences of actually Autistic people who have experienced pregnancy and birth.
Pregnant people often spend at least some time researching what to expect during pregnancy and birth – there’s an abundance of books, articles, websites and forums highlighting this fact – yet pregnant Autistics and Autistic parents have been accused of Fabricated or Induced Illness due to the volume of research they have conducted and their use of medical – rather than colloquial – terminology in appointments. This is discussed in a 2017 article by The Guardian in which Autistic women report their experiences of motherhood including fears of putting “professionals’ backs up and [being] accused of causing or fabricating their children’s condition” and being “terrified their children will be removed from them if social workers misinterpret their autistic traits as indicating potential harm to the child.”
It’s also reported that the experiences of pregnancy and birth for Autistics are quite different from their non-Autistic counterparts, and that sensory differences (for example) were dismissed as ‘not possible’ by their midwifery team. An article on Tommy’s (the miscarriage and baby loss charity) website features Rachel, an Autistic mum who has experienced multiple miscarriages. Rachel talks about how she (along with “many Autistic mothers”) are “very aware of their internal body state and knew things about their pregnancy before the textbooks said they should” which meant that she was more acutely aware of pregnancies she had lost in the early stages of conception. Rachel also discusses the difficulties Autistics have with processing pregnancy loss, and that “some may not process what has happened immediately or even within the weeks and months that follow the loss.” This processing delay coupled with reduced social networks reported by Autistics (corroborated by Potvin, Brown and Cobigo’s aforementioned study) contribute to the “isolation and detriment [pregnancy and baby loss] causes to mental health.”
A study published in Women and Birth in 2017 explores the sensory differences reported by pregnant Autistics alongside other reported challenges they face. The review of current literature and its supplementary anecdotal evidence from blogs found that Autistic women “reported that they needed to feel more empowered about the circumstances of their giving birth and that they relied on three factors during their experience—clear communication, sensory adjustments and change management.” It highlights issues faced by Autistic people more generally – hospitals being noisy environments and touch which “may bewelcomed by many patients can be the cause of pain or distress for the [Autistic person].”
Therefore, Autistic UK recommend that the needs of Autistic women, non-binary, and otherwise gendered people who give birth are reviewed and recognised in accordance with ICPD. Midwifery teams need to receive clear guidance and training from Autistics with lived experience in order to ensure the needs of all pregnant Autistics are recognised and met. There are a number of Autistic professionals with experience in this area, including Hayley Morgan MSc, who are able to provide talks and training regarding the Autistic experience of pregnancy and birth in order to achieve positive outcomes for both the Autistic person and their baby.
 Potvin, LA, Brown, HK & Cobigo, V (2016), ‘Social Support Received by Women With Intellectual and Developmental Disabilities During Pregnancy and Childbirth: An Exploratory Qualitative Study’ Midwifery, Vol. 37, pp 57-64 (Online) accessed 9th July 2020. Available at https://pubmed.ncbi.nlm.nih.gov/27217238/
Anand was sixteen years old when he and his family moved to the UK. His father,
a highly respected expert in economics, sustainability and social development,
was asked to join Oxfam in their Oxford office to be their Global Resilient
Livelihood Advisor. Gopul settled in quickly and loved his new life.
A Turn for the Worse
Unfortunately, when Shekhar, Gopul’s father, tried to renew their visa after five years, the Home Office rejected their application, despite Oxfam still needing him to do his vital work. The family were told they would have to leave the life they had built for themselves. Because of this, Gopul’s world spun out of control and his health took a dramatic turn for the worse. Shekhar filed an appeal, then the family heard nothing from the Home Office for two and a half years.
The extreme stress of this uncertainty caused Gopul to deteriorate quickly and he spent ten months in an Assessment and Treatment Unit; languishing until his parents won a tribunal for his release. He still has nightmares of the abuses he suffered there. Gopul stopped being able to go to his social groups and his impulsive behaviours increased. He stopped being able to take public transport, even with two support workers helping him and his world shrunk to his family home, spending time on his computer and drawing.
The Home Office eventually wrote to the
Anand family, telling them that their appeal had been rejected and that they
had to leave. Shekhar asked for an exemption based on medical grounds, that
Gopul was by this time in no fit state to travel. While they await the answer
to their appeal for an exemption, the Anand family cannot travel as their
passports are still being held by the Home Office. They were not even able to
visit Shekhar’s mother when she underwent heart surgery.
Along with the application for
the exemption, Shekhar submitted evidence from Gopul’s psychiatrist and social
worker that clearly stated that a plane journey would cause Gopul to be a
danger to himself and possibly others. They also pointed out that the support
and treatment that Gopul was receiving was not readily available in India and
his physical and mental health would suffer tremendously.
Running Out of Time
Anand family find out if their exemption will be granted at the end of January.
If the answer is no, they have no further options, they will have to leave
despite the risk to Gopul’s health and the possible risk to other passengers on
We are asking everyone to sign
the petition linked below asking the Home Office to grant Gopul the medical exemption
that would allow him and his family to stay in the UK and continue to receive
the support and treatment he needs to stay safe. Please share this article to
help us spread awareness.
If you are able to do so and
wish to do more, please contact your MP, any journalist you know, anyone you
think might be able to help, and tell them what is happening. The more people
know about Gopul and the more they protest at his inhumane treatment, the
better chance we have of the Home Office deciding they need to accept the
appeal and grant his exemption.
Gopul Anand, 23, is fascinated by computers. He loves to explore science, music and art and has an immense interest in learning as much as he possibly can about the world. His brother, currently studying computer science at university, shares information on what he is studying with him as well as playing the odd video game or two.
Gopul is an autistic and multiply disabled young man currently living in Oxford with his father and mother and his younger brother visits him during term-breaks and weekends. He receives round-the-clock care from his family after his health deteriorated drastically in 2013. He was sent to an ATU (Assessment and Treatment Unit) in 2015. After 10 months, his family were forced to go through a mental health tribunal to have him released and Gopul still struggles with nightmares and flashbacks about his experience there.
Due to his many conditions (autism, learning disability, epilepsy and schizophrenia), Gopul needs a significant amount of care. His medication often leaves him sedated to such an extent that he is unable to carry out a regular daily routine without support. He is assisted by two support workers when he needs to use public transport or go shopping. Feelings of anxiety manifest in outbursts and meltdowns, but Gopul often finds ways to stim in order to stem these.
Visa Troubles and Stress
Gopul’s family moved to the UK as his father, Shekhar, started working at Oxfam on a five-year intra-company transfer visa. This had previously been extended and was to extend further, as Oxfam were hoping to keep Shekhar working with them due to his immense experience and talents. However, as the rules around visa extensions changed as part of the policy on immigration, Shekar and his family were planning to return to India. Unfortunately, after Gopul’s health deteriorated in 2013, it is now impossible for him to travel safely.
Medical professionals, including his doctor and social worker, have stated that Gopul is unfit to travel, and that both his safety and the safety of the other passengers would be at risk should he have to leave his current environment. Should Gopul be forced to leave the UK, his family and medical professionals report that not only would his condition will suffer irreparable damage and extreme anxiety, but it could also make him dangerous to other passengers during travel, also affecting his mental health and well-being in the long run.
His current care plan has been thrown into uncertainty because of the protracted situation with the Home Office. Gopul and his social workers have spent many months building trust and a strong relationship with one another and, after his experiences in the ATU, family support is key. Gopul’s friends, family, medical team and possessions are all here, in the UK. Here, he is in a safe environment with appropriate support and medical treatment. This support would be unavailable should Gopul and his family be forced to leave.
Human Rights Violation
Because his health conditions are not obviously physical – i.e. either because they are invisible disabilities or mental health conditions, the Home Office has elected to ignore all medical evidence provided. The family’s solicitor, Sugina Mehra, affirmed that the level of medical evidence supplied by Gopul’s psychiatrist and social worker was ample. This, of course, is a grave breach of Gopul’s human right to not be discriminated against because of his disabilities. Disabilities should not have to be visible to be counted as real.
This situation has deeply affected his mental health. He has stopped attending regular social groups due to the intense stress he feels about his family’s situation and he is now less able to control his impulsive behaviour as his stress increases. Gopul considers the UK his home. It has been his home for the past seven years.
It’s the International Day of Disabled Persons, and I don’t know what to say anymore. I was hoping to write something far more professional – but this day doesn’t feel like it’s ours anymore.
I’ve spent most of the day thinking about what precisely to talk about today in regard to autism and disability. I could use this time to talk about how media representation of autistic people is consistently poor, how it’s a symptom of the consistently poor representation of disabled people within the media. I could talk about how multiply-disabled people still find it hard to find their place within the autistic movement, how we’re still pretty dominated by white, cis-gender, male, straight and able individuals outside of social media. I could talk about how we are still forced to ‘debate’ whether autism, and other neurodivergent conditions, are in fact disabilities, or how we’re still bogged down in this needless conflict over person-first and identity-first language, when our views across the community are clear.
But I’ll do all of those throughout the month. Today, I’m going to take this day, tear it apart and put it back together.
We’re talked about but aren’t given the chance to speak. Businesses flash their purple emblems and their Disability Confident labels, whilst we can’t find work with them and they refuse to develop policies and implement support that actually allows disabled people to be a part of their workplace. Governments promote this day and show support our causes as they cut welfare and support. Charities laud this day whilst they put children like us in solitary units, forcing families apart and destroying our physical and mental well-being. Parents still want to cure those who do not want fixing, putting us through medically sanctioned torture in order to make us “normal” to them.
I recently had a conversation with a close friend about business events like “Purple Tuesdays” and “Autism Hours”. How, to me, they feel patronising and that it makes disabled people feel like they only exist for one day to these places. How autistic people and other neurodivergent people feel they’re allowed to shop by abled people for an hour every so often. How it’s another example of how our needs are only met when it’s convenient.
How this is an example of how we’re often treated in education – if funding isn’t there, if we’re doing academically okay, we won’t find support. How documents supporting educational support can be so easily taken away from disabled and neurodivergent young people. How this is a cruel way to make us realise that this is the life we’ll live, and how whether it’s an EHCP as a child, PIP as an adult, pensions as we get older, we’ve got to constantly fight just to have our needs recognised, never mind actually supported.
How do we feel comfortable supporting an international day of disabled people when people can’t even say “disabled”, or when “autistic” is a dirty word, a slur used across the board online and in public? We have to crowdfund to get access to materials that we need to survive – and people think lighting up purple is enough?
I’m multiply-disabled. For me that includes being autistic amongst other things. Today doesn’t feel like my day any more. I want to see and support disabled people, not companies with purple t-shirts. I want to see access improvements across the board. I want to see autism recognised as something acceptable globally. I want to discuss autism as something that’s more than white – because it is overwhelmingly white people like myself leading these conversations, and I recognise that.
This day is about us – our rights, our experiences. Outside of social media, it doesn’t feel anything like that. We’re an amazing bunch, and we exist every other day of the year.
I want any autistic and/or disabled person to use this post to promote themselves in any way possible. Tweet us (@AutisticUK) a link to your work or what you like to do. Join our Facebook group (Neurodiverse UK) and share your story on accessing benefits or accommodations. Email us (firstname.lastname@example.org) to send us a blog post for our web site to discuss disability and autism. We want this to be your space; your network. We want to promote you.
The following is a statement regarding the resignation of autistic and disabled MP Jared O’Mara from the Labour Party. This comes shortly after his reinstatement after being temporarily banned from the party after allegations were made of homophobia and misogyny online.
It is true that disabled people, autistic people, and people who fit into the wider neurodiversity umbrella – are not given a voice within UK politics as a whole. Mental health, too, is a topic only recently brought into discussion.
For this reason and this reason only, it is a shame to see a disabled and autistic member of parliament resign from their party.
Autistic UK believes that O’Mara’s resignation from the Labour Party, and his continuation to serve as an MP for Sheffield Hallam, is a failing on his part to uphold his role to represent his constituents, his party, and to autistic people as a whole.
As a representative of the UK, O’Mara – like all MPs – is to be held responsible for his past and present actions by the public. Whilst, as stated, his actions were not necessarily “criminal”, to excuse discriminatory actions in the form of harassment and victimisation online as such is disgraceful.
There is a notable difference between behaviour that is considered “poor” because autistic people misunderstand a society that does not work for them, and discrimination. There’s a notable difference between laughing during a cinema screening and discriminating against women and LGBTQ+ people. Discriminatory, cruel and vindictive behaviour is not due to an autistic person’s relationship with society and is, like neurotypical people, entirely upon themselves.
Autistic UK stands against all forms of discrimination. We will never condone an individual using their place in one discriminated group as an excuse, however veiled, to discriminate against others.
It is true that people do change and a person should not solely be judged by their past. However, any individual must be held responsible for their past actions if they have not openly done so already. To refuse to acknowledge your past only causes more harm to those you have harmed and failed.
Through his recent actions, he has – whether consciously or not – made his prior comments, his resignation, and his treatment by the party as a whole, about being autistic. A decision that undermines autistic and disabled people as a whole.
Using your place within the autistic community – or any marginalised community – to excuse discrimination is incredibly dangerous and is a method used widely within certain circles to excuse white, often male, violence against women. Using the fact you are autistic as an excuse for poor behaviour only serves to damage the reputation of all autistic people.
It is deeply hypocritical to accuse a political party of not sharing a “commitment to the true definition of equality and compassion” when suspended for misogynistic and homophobic comments that go against the exact beliefs stated.
The fact an individual is disabled, mentally ill, neurodivergent or a mixture of these neither explains or excuses behaviour that is abhorrent, and O’Mara’s unwillingness to accept a formal warning and attend any form of training shows an unwillingness to accept and learn from his past wrongdoings.
We are delighted to be able to bring to you our exclusive interview with Steve Silberman, the author of NeuroTribes!
If you wish to purchase NeuroTribes, it is available on Amazon.co.uk. Just click here!
Without any further ado, let’s dive into the questions:
AUK: What led you initially to decide to write about autism and its history?
Steve Silberman: I tell the whole story in great detail in the introduction to NeuroTribes, but here’s a short version. In 2001, I wrote one of the first articles about autism in high-tech communities for Wired magazine, called “The Geek Syndrome.” I wrote it when the hysteria about vaccines was at its height, but instead I focused on genetics, and on the notion that places like Silicon Valley might offer social and romantic opportunities for people with autistic traits that had never before existed in history, which was contributing to an increase in the prevalence of autism.
Because the article came out right after 9/11, I assumed it would be overlooked and forgotten, but instead, the opposite happened. I got emails about that article nearly every week for at least ten years. These emails mostly came from autistic people who recognized themselves in my writing, and from the parents and relatives of autistic kids. Most of it had to do with lack of access to basic services for autistic people and their families – long waiting lists for diagnosis, lack of employment and housing, lack of health care, lack of transition programs.
Meanwhile, the media was perseverating on vaccines, because the rise in the estimated prevalence of autism that began in the early 1990s had never been explained. It was clear that the concerns of the media and the concerns of the people on the front lines of autism – that is, autistic people and their families – had drifted really far apart, and at the nut of it was this unexplained apparent rise in autism prevalence. As a science journalist, I had the gut feeling that something had gone wrong with our understanding of autism history somewhere, so I set out to find it. That’s how I decided to write NeuroTribes.
AUK: Were you surprised to win the Samuel Johnson Prize in 2015 and be propelled into the position of Autism Guru and advocate for Autistic Rights?
Steve Silberman: Heh. Yes, I was completely surprised to win the Samuel Johnson Prize. All the finalists were asked to make videos about their books, so you had footage of Emma Sky, author of The Unravelling, running heroically through flaming landscapes in Iraq, and films of Robert MacFarlane, author of an exquisitely written book called Landmarks, striding through the forest, looking like a handsome ginger Thoreau – and then you had chubby me, babbling away in a bookstore in San Francisco that turned out to be amazingly noisy because mums with screaming babies kept coming in, ignoring the “QUIET PLEASE – FILMING IN PROGRESS” sign. I figured my only prize would be a trip to London – which I would have been very grateful for! – and that would be the end of that. But when it became clear at the ceremony that NeuroTribes was the winner, I wept. The previous winner, Helen Macdonald, author of the beautiful memoir H is for Hawk, sweetly whispered in my ear, “You’re going to have a very busy year.” I wish my father Donald, an English professor who taught Samuel Johnson’s work, had lived long enough to see me win the prize.
I don’t consider myself an “Autism Guru” at all. I’m an autism scholar and historian. That said, I’ve made a few friends over the years who I consider my personal autistic gurus – people who really helped me understand how autism feels from the inside. I’ve also met other neurotypical allies who helped me understand the trajectory of the research across the decades. You know who you are out there, and I’m in your debt.
Becoming an ally myself just felt like a natural outgrowth of my research. Back in 2001, when I wrote “The Geek Syndrome,” I was still looking at autism primarily through the lens of the medical model, but even then I started to ask questions about some of the things that clinicians were telling me. Then when I took the full plunge into history for NeuroTribes – which made clear to me how much suffering had been inflicted on autistic people over the decades because of bogus theories of autism causation or very limited ideas of what people on the spectrum are capable of — adopting the perspective of the social model of disability felt like the morally right thing to do. The fact that I’m gay, and that my identity had been considered a psychological disorder by the medical establishment up until the 1970s when I was in high school, undoubtedly hastened this evolution in me.
AUK: You recently took part in the filming of the Chris Packham Documentary ‘Aspergers and Me’ for the BBC. What was your favourite memory of the time you spent with Chris?
Steve Silberman: Let me just say up front, Chris is the coolest – brilliant, unpretentious, cheeky, gorgeous, observant, a font of knowledge about the natural world, and truly hip. We had a marvellous afternoon driving around Silicon Valley, talking about autism and neurodiversity when the camera was on, and about seeing punk bands back in day and other fun stuff when the camera was off. But one of my favourite things happened after we stopped filming, when we stopped for lunch.
Suddenly, right in front of our table, a robin fell out of the sky, hit the sidewalk hard, and started thrashing around. Normally I might such a thing happen and think, “Oh, how sad,” and just try to forget it, feeling that there was no way I could help. But Chris immediately jumped to his feet, cradled the robin, groomed it confidently, and moved it from the sidewalk to a patch of grass where it would be safe. As he did these things, a crowd of girls walking home from school collected around Chris on the sidewalk, astonished. It was as if Superman had appeared just in the nick of time to save the bird. It was a beautiful thing to witness.
AUK: What does the word “disability” mean to you, and do you consider autism to be a disability?
Steve Silberman: One of the best definitions of the word “disability” is that it describes a mismatch between the amount of support a person needs from their environment and the environment they’re in. If you live in a wheelchair in a town with no kerb cuts in the sidewalk, no accessible public transit, and no accessible classrooms, bathrooms, stores, and restaurants, you’re highly disabled — but if your town has these things, you can get around quite well. In other words, disability is not located solely in the person; it describes a relationship between the person and society.
But it’s important to acknowledge that all forms of disability cannot be eliminated, even through remediation. Autism is certainly a disability in neurotypical society. In autistic spaces like Autreat that I described in my book – where the environment is created by and designed for people with atypical neurologies – I got to see autistic people be much less stressed out, much less in edge-of-panic mode, just hanging out with other members of their tribe. These included non-verbal autistic people and those usually described as ”low functioning,” though I avoid the use of functioning labels myself. When autistic people are allowed to go with the flow and stim to their heart’s content – or even to rock and wail – without being judged by neurotypical observers, they’re functioning in a way that‘s natural to them. At the same time, however, my autistic friends tell me they would still have issues with executive functioning and anxiety, even in a highly supported environment.
Because society has tended to view autism as a psychiatric disorder, a distinctive aberration of modern times, or a mysterious plague, it’s still early in the development of accommodations for cognitive disabilities, whether it’s autism, dyslexia, or ADHD. I think autism is best understood as a relatively common cognitive disability, and most of the research devoted to ensuring success for autistic people, particularly in adulthood, is yet to be done.
AUK: What benefits do you think autistic and other neurodivergent people bring to the rest of society?
Steve Silberman; People with autistic traits helped us get to the moon, built a free global amateur radio network that anticipated the Internet, predicted the existence of antimatter, and made us feel the exquisite beauty of Bach — and that’s just a few random examples from one category of neurodivergence that I happened to run across for my book. If you think of how many major cultural advancements have been made by people who were bipolar, schizotypal, or chronically depressed, you start to realise that neurodiversity is not just about the contributions of individual geniuses, but about the whole texture of human culture. How do we treat the people who are working with us, but who may not think like us, on the grand project of advancing human culture? That may be the essential question of the early 21st Century.
AUK: Can you tell us your favourite story about your hero and former teacher, poet Allen Ginsberg?
Steve Silberman: I have a lot of them, but here’s one I don’t think I’ve ever told in public before. Back in the 1980s, I spent a couple of days with Allen near San Jose in California. He had a round of TV interviews and book-signings scheduled during the day and a huge sold-out reading to do at night. We’d been running around all afternoon and I felt exhausted, so when we got back to his hotel room, I flopped down on his bed and groaned aloud. Allen – who was 31 years older than me and in his 60s by that point – looked down at me with a pitiful look and said, “Oh, are you gonna faint or something?” It was a little harsh, but he made his point and it stuck with me. Since then, I’ve tried not to drag around, feeling sorry for myself. There’s work to be done!
AUK: Do you have any plans to write further books about other areas of autism?
Steve Silberman: I don’t think so, though I’m sure I’ll write articles here and there. I made my contribution. Autistic people should be leading the conversation.
AUK: What, in your opinion, would be the single most effective change that society, professionals or parents/carers could make to improve the lives of autistic people?
Steve Silberman: To change the primary focus of research from “How can we prevent autism?” to “How can we help autistic people and their families lead happier, healthier, and more secure lives?”
AUK: In your opinion, how can parent/professional-led organisations best help with shifting the discourse away from cure talk and towards acceptance and inclusion of autistic people?
Steve Silberman: It has been my pleasure in the course of my travels for NeuroTribes to meet autistic people who have taken leadership positions in parent-professional groups like ASPEN in New Jersey and research organisations like Autistica in the UK. It’s just so obvious that autism organisations benefit from adults on the spectrum helping to set their agendas for the future. Who better knows what autistic people really need to improve the quality of their lives? The invisibility of autistic adults in previous eras has created a huge pool of untapped talent in the world of advocacy, and the autistic qualities of relentlessness and intense focus can come in very handy when you’re trying to effect social change. That’s the way to make your autism organisation more effective: hire autistics in policy-making positions, not just as token spokespeople. We’re long past the time when it’s OK for the societal conversation about autism to unfold behind the backs of autistic people.
From all of us here at Autistic UK, we would like to say a huge thank you to Steve Silberman for giving up some of his time to answer the questions we put to him. We very much appreciate your continuing work, and everything you have done for the Autistic Community. You have been one of our strongest and most steadfast allies, and a giant source of encouragement for so many of us.