Laying out the evidence that shows some links.
Posted September 24, 2021Â |Â Â Reviewed by Tyler Woods
KEY POINTS
- The cognitive revolution saw two new circuits in the human brain: the Empathy Circuit and the Systemizing Mechanism.
- We have evidence that the genes for autism have driven human invention through the Systemizing Mechanism.
- We owe people with autism a huge debt of gratitude for the role their genes have played in human progress.
It is clear that our hominid ancestors could use simple stone tools. For example, Homo habilis and Homo erectus, who both lived 2 million years ago, used stone axes and hammers. And so could the Neanderthals who lived as recently as 40,000 years ago. But despite small changes in the design of their tools, for millions of years, there was little evidence for generative invention: the ability to invent in multiple ways, not just as a one-off. If we look at non-human species alive today, a lot of animals can use simple stone tools. Chimpanzees, for example, can use a rock as a hammer to crack a nut, and crows can drop a stone to raise the water level to be able to reach a worm. Both the behavior of other animals and our hominid ancestors can be parsimoniously explained as the result of associative learning, that is, forming an association between two items, A and B, with little sign of generative invention.
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Published on 16 September 2021
The latest monthly Assuring Transformation NHS Digital data shows that in August 2021:
- In total 2,040 autistic people and people with learning disabilities are in inpatient mental health hospitals in England.
- 1,185 (58%) of these people are autistic.
This is the most up-to-date record of how many autistic people and people with learning disabilities, both adults and children, are currently in inpatient units in England. It also shows how long they have been in for, when their care and treatment is checked and what kind of unit they are in.
This data is important because it holds Government to account on its continued commitments to reduce the number of people in these institutions.
Despite some progress moving people with a learning disability out of hospital and into the community, the number of autistic people in inpatients facilities has increased. In 2015, autistic people made up 38% of the number in hospital, now it is 58%.
What needs to change
Alongside autistic people and families, we are continuing to campaign for better support and services. And we are also helping autistic people and families who are detained or at risk of detention directly, via our Autism Inpatient Mental Health Casework Service for England.
The Government recently confirmed important plans to reform the Mental Health Act, which could stop people being sectioned just because they’re autistic. This is a big step forward.
But the Government and NHS also need to first stop autistic people reaching crisis point in the first place. This means investing in better social care and mental health services that actually meet the needs of autistic children and adults.
And if someone is admitted into hospital, it’s essential that this is for as short a time as possible and that they’re supported by people who understand autism, in an environment that reflects their needs.
Do autistic people need to be in inpatient units and why do they get ‘stuck’ there?
It is widely recognised that for most autistic people, care in an inpatient unit is rarely helpful – and can be deeply damaging.
Wards can be noisy, bright and unpredictable. Without reasonable adjustments to the environment and support from a professional who understanding autism and how to adapt their care, it can be completely overwhelming, particularly if you have an extreme sensitivity to sound, light or touch. It can actually increase someone’s level of distress, which can lead to further restrictions and make it even harder to move to support in the community. On top of this, there aren’t enough of the right type of mental health and social care services in the community for autistic people to move into.
The average length of stay is 5.5 years. And we continue to hear alarming cases of overmedication, seclusion and unnecessary restraint.
A History of broken promises
In 2011 shocking abuse was uncovered at Winterbourne View Hospital, an inpatient unit for people with learning disabilities. This scandal led to the acknowledgement that there is a significant number of autistic people, those with a learning disability or both, stuck, inappropriately, in inpatient settings – largely because services to support them in the community simply do not exist.
The Government’s response came in the form of the Transforming careprogramme which aimed to close up to half of the inpatient mental health beds and move people back to their local communities by 1 June 2014. This did not happen.
In 2015, NHS England published a 3-year closure programme and national plan called Building the right support. This set out how the NHS and local authorities in England propose to improve the lives of autistic people, those with a learning disability, or both in inpatient settings.
The key promises they aimed to achieve by the end of May 2019 included:
- Closing 35-50% of inpatient beds for autistic people with or without a learning disability.
- The right support would be developed in communities to support these people.
Alongside this, NHS England published a ‘service model’ setting out all the local support that should be available in each area by March 2019.
But this is still not the case. There is simply not enough of the right type of community services, which is a key reason why autistic people are still being admitted to inpatient care and why it’s often so hard for them to move back to the community.
Future
Alongside autistic people and families, we have been highlighting these injustices and campaigning for action from the Government and the NHS for years. NHS England’s Long-Term Plan reinstates its pledge to reduce the number of autistic people or people with a learning disability in mental health hospitals.
It has also pledged to:
- transform mental health care so more people can access treatment
- continue to develop services in the community and hospitals
Mental health law
The overwhelming majority (90%) of autistic people who are detained in hospital are put there using the Mental Health Act 1983. We and hundreds of thousands of campaigners have been calling for changes to mental health law for years, so it respects autistic people’s rights. In January 2021 the Government published promising proposals for change to mental health law in England and Wales which could result in fewer autistic people being wrongly sent to mental health hospitals. This is a huge step forward.
They sought people’s views on these changes and the Government has now published their response which you can read our thoughts about here. You can also read more about the proposals in general and what they could mean for autistic people and the Government’s timeline for changing this law here.
It’s right that the Government has listened and is taking action. But it’s important to remember that these changes will take years to come into force and, crucially, won’t on their own end the scandal of autistic people being stuck in mental health hospitals. The Government and NHS need to stop autistic people reaching crisis in the first place, by investing in better social care and mental health services that work for autistic children and adults.
Further information
- Read our news story on the planned changes to the Mental Health Act.
- Read Alexis’ story about being “locked inside†various mental health hospitals for three years.
- Read our information, advice and guidance about autism and mental health.
- Find out about our specialist helplines/casework services and other help and support.
- Find out about our Autism Inpatient Mental Health Casework Service, which provides confidential advice and support autistic people at risk of going into inpatient units or stuck in them – or their families.
Source:
https://www.autism.org.uk/what-we-do/news/autistic-people-in-mental-health-hospitals
Published on 24 September 2021
An independent review of the Scottish Government and COSLAs 10-year Autism Strategy has been published today.
The strategy which comes to an end this year set out with the vision that by 2021 autistic people would be “respected, accepted and valued by their communities and have confidence in services to treat them fairly so that they are able to have meaningful and satisfying lives’.
The review concludes: “After ten years, valuable resources have been created and new and additional services delivered. However, real change for many autistic people, both in how they engage with services and in how they are supported to live productive lives, is not as evident. To have a greater impact, the services and support need to have greater reach, become embedded and be sustained.â€
This echoes the findings from the Cross-Party Group on Autism’s own 2020 review the ‘Accountability Gap’ which found (from a survey of 900) that 72% of autistic people and families did not have enough support to meet their needs across a number of areas including education, care and employment.
In the lead up to the May Holyrood Election National Autistic Society Scotland together with partners Scottish Autism and ENABLE Scotland campaigned under the banner of ‘Our Voice Our Rights’ for a Commissioner to promote and protect the rights of individuals and their families.
This resulted in a commitment in the SNP Manifesto to introduce a Commissioner as part of a Learning Disability, Autism and Neurodiversity Bill. Scoping work on this is due to begin shortly.
Nick Ward Director of National Autistic Society Scotland said:
“What is clear from this report is that autistic people and their families are still, after ten years, not getting the vital support that they need to live meaningful and fulfilled lives. Today’s review of the Scottish Strategy for Autism echoes findings from last year’s ‘Accountability Gap’ report produced by the Cross-Party Group on Autism which found that while progress had been made, 72% of individuals and their families did not get enough support to meet their needs.
Today’s review sets out some positive ways forward and we are delighted that Scottish Government has committed to establishing a Commissioner. We believe a Commissioner with robust powers to uphold rights, challenge bad practice and promote good will lever real change.â€
Suzanne from Dunfermline was part of the ‘Our Voice Our Rights’ campaign and has an autistic son called Callum. She said:
“Callum has a lot of challenges, he is constantly having to deal with sensory issues and sounds and he needs someone supporting him most of the time. It’s difficult for people to understand what he is saying and so we need to be with him when he is out to help as well as explain his compulsion to touch people.
When Covid hit a lot of the services withdrew leaving us to deal with health education and social work issues. Over time that has got better but we’re still not receiving the level of support we had before the pandemic.
I think there needs to be a lot more joined up thinking, sometimes we end up going from service to service – there needs to be someone holding the system together, someone at a national level I can go to if there is an issue.
My hope is that when Callum leaves school he doesn’t end up sitting in a day centre all the time and that there are opportunities for him. He loves buses and would love to be a bus driver. That may not be possible but working or volunteering in and around buses would be amazing for him.â€
Source:
https://www.autism.org.uk/what-we-do/news/scottish-autism-strategy-criticises-lack-of-progre
Join us for a special virtual edition of our annual celebration and fundraising event from Wednesday, November 17th through Friday, November 19th. We’re so excited to share the gala with disability community members and allies from across the country and around the world, who usually wouldn’t be able to attend in-person.
We’re happy to announce that Hari Srinivasan will be our Master of Ceremonies!
Image description: A young Indian American man in his 20s with black hair under a white baseball cap. He is wearing jeans and a long sleeved gray shirt that says California Golden Bears. He is standing next to a stone railing.
Hari Srinivasan is a minimally-speaking autistic student at UC Berkeley. He is on ASAN’s Board of Directors and a 2019 alumnus of our Autism Campus Inclusion program! At UC Berkeley, Hari is a student journalist for the Daily Californian, student instructor for a class on autism, research assistant at the UC Berkeley Psychology and Disability Labs, and was the first nonspeaking president of the student group, Autism:Spectrum At Cal. As a Haas Scholar, he is doing research on how autistic people experience awe. Hari was recently selected to serve on the Interagency Autism Coordinating Committee, which advises federal policy and priorities around autism. We are so grateful for Hari’s dedicated advocacy!
Hari hopes to bring attention to issues which impact disabled people in myriad areas and across the lifespan. He also wants to emphasize the urgency to include and address the issues faced by the more marginalized groups and higher support needs within the autism and larger disability community, including their mental, physical healthcare needs and comorbidities. When the voices of select groups get left out of the conversation, it negatively impacts their access to spaces, resources, funding, policy and quality of life.
Gala tickets are donate-what-you-can, but no donation will be required to attend our virtual gala events. Proceeds will support our advocacy work and programs for the coming year, and allow us to continue working to empower disabled people across the country. If you’re able, please consider donating to support our work. If you are not able to donate, no worries — we’re just happy to have you celebrating with us!
Honorees and other programming will be announced in the coming weeks.You can RSVP to our Facebook event and invite your friends! We’re excited to celebrate together.
On Monday, ASAN and the Disability Rights Education and Defense Fund (DREDF) filed an amicus brief in a Supreme Court case about reproductive choice. An amicus brief is a way for people who aren’t participating in a lawsuit to tell a court what decision it should make. The brief explains how important it is for people with disabilities to make choices about our own bodies.
The case, Dobbs v. Jackson Women’s Health Organization, is about a Mississippi law that bans abortions more 15 weeks after a person’s last period. The Supreme Court said decades ago that this is against the Constitution. The State of Mississippi is asking the Court to change its mind.
“If the Supreme Court does change its mind, that could threaten many other rights,†said Sam Crane, ASAN’s Legal Director. “It could mean that states can totally ban abortion. It could also mean that states could force people with disabilities to have abortions.†There have been cases where courts ordered disabled people to have abortions. Those courts were overruled because the Supreme Court said that it should always be a pregnant person’s own choice. If the Supreme Court changes its mind, our choices to get pregnant and have children could also be in danger.
ASAN and DREDF’s amicus brief explains that when the government decides what happens to our bodies, that can hurt us. For example, the government has forced disabled people to get operations that prevent us from having children. The brief also explains that some people with disabilities can face extra harm if we can’t make choices about whether to stay pregnant. It talks about why sometimes, people with disabilities might not be able to make a decision and get an abortion before 15 weeks. It explains that disabled people of color and disabled people living in poverty face extra barriers and health risks. You can read the amicus brief here.
To write the amicus brief, ASAN talked to many disabled people who got abortions, including people of color and trans people. They talked about how much it mattered to be able to make their own decision. Some said they would have died if they had been forced to stay pregnant. We’re grateful to them for sharing their stories.
ASAN also is grateful to the Center for Reproductive Rights, which helped to organize the brief, to volunteer lawyers at Skadden, Arps, Slate, Meagher & Flom LLP, who helped to research and write the brief, and to WeTestify, which helped connect us to people with important lived experiences.
The Autistic Self Advocacy Network seeks to advance the principles of the disability rights movement with regard to autism. ASAN believes that the goal of autism advocacy should be a world in which autistic people enjoy equal access, rights, and opportunities. We work to empower autistic people across the world to take control of our own lives and the future of our common community, and seek to organize the autistic community to ensure our voices are heard in the national conversation about us. Nothing About Us, Without Us!
ASAN is pleased that the Food and Drug Administration (FDA) has filed an appeal to a court ruling that would enable the Judge Rotenberg Center to continue using skin shocks on disabled people.
In 2020, the FDA banned the use of skin shock devices on people with disabilities – a practice that the United Nations has recognized as torture. The ban was supported by decades of advocacy and extensive research. The Judge Rotenberg Center sued in order to keep using the devices. The case went before three judges on the DC Circuit Court of Appeals. Two out of those three judges sided with the Judge Rotenberg Center, striking down the ban. The Court ruled that the FDA could not selectively ban skin shock devices based on how they are used. By striking down the ban, the DC Circuit paved the way for the Judge Rotenberg Center to continue subjecting disabled people to painful electric shocks on a daily basis, potentially undoing all the progress that the FDA had made.
Now, the FDA is asking that the case be heard by all of the eleven judges on the DC Circuit. This is called a rehearing en banc. If most of those judges side with the FDA, the ban can go back in place. ASAN supports the FDA’s choice to seek review in this case. It is critical that the full court move swiftly to reinstate the ban – not only to prevent further torture, but also to ensure that the FDA can take action on other dangerous medical devices.
Our community has fought long and hard to end the Judge Rotenberg Center’s torture of disabled people. ASAN will continue to collaborate with state and federal policymakers to end all forms of abuse against disabled people. We will not rest until no disabled person is subjected to torture in the name of “treatmentâ€.
For more information, contact Sam Crane, ASAN’s Legal Director, at scrane@autisticadvocacy.org.
You can view this statement on our website here.
The Autistic Self Advocacy Network seeks to advance the principles of the disability rights movement with regard to autism. ASAN believes that the goal of autism advocacy should be a world in which autistic people enjoy equal access, rights, and opportunities. We work to empower autistic people across the world to take control of our own lives and the future of our common community, and seek to organize the autistic community to ensure our voices are heard in the national conversation about us. Nothing About Us, Without Us!
Sep
26
The transformation of Greta Thunberg
Words:Â Simon Hattenstone
Portraits: Marcus Ohlsson
Sat 25 Sep 2021 08.00 BST
Greta Thunberg has made the ultimate sacrifice for the Guardian. She’s allowed us to turn her into a human oil spillage. The treacly black stuff is dripping from her hair, down her nose, past her cheeks on to her neck and shoulders.
Down, down, down it drips. By the time we speak on Zoom, a day later, she has just about got herself cleaned up. Has she ever been covered in oil before? (It’s actually a mixture of non-toxic finger paint and olive oil.) “No,†she says. This is a typical Thunberg answer – short, factual, to the point. She never likes to waste her words. How did it feel? “It felt better than I thought it would feel. I had a ribbon on my hair to not get my hair black, but then it spilt through the ribbon so my hair was completely black. It was very difficult to get off.†I suggest that she sues the Guardian. “Yes,†she says. Thunberg isn’t smiling.
We talk first thing on a Sunday. Look at Thunberg and she seems little changed – still elfin-like and earnest; still quoting the climate science with fastidious politeness; and still with that curious mix of pessimism (we’re doomed if we don’t act) and optimism (we can avert catastrophe if we do). But, as she relaxes, I begin to discover that this is a very different Thunberg from the one she presented to the public in 2018. While she has done much to change our perspective of the world, the world has done much to change her – and, she says, for the better. Despite the climate crisis deepening by the day, Greta Thunberg has learned how to be happy.
Read in Full:
More and more autistic students are entering higher education, but they often face barriers to success, with a lower graduation rate than non-disabled students. Some colleges have created programs for autistic students in order to address these barriers — but these programs vary widely, and are often created without the input of autistic people ourselves. How do autistic students define success for ourselves? How can colleges and universities address the barriers that autistic students face? We address these questions and more in our new white paper “Benchmarks to Inclusion: Creating Core Principles to Facilitate Autistic Student Success in Higher Education.â€
For this white paper, ASAN brought together autistic college students to discuss what success looks like for autistic students and how colleges can help them get there. “Benchmarks to Inclusion†unpacks barriers to success, looks at how those barriers can be addressed, and lays out ten core principles to make higher education more accessible to autistic students. A summary of “Benchmarks to Inclusion†is also available in three formats: an academic summary aimed at researchers and professionals, an Easy Read factsheet that uses pictures and large text, and a Plain Language version without accompanying graphics.
Everyone deserves an equal chance to experience higher education. Right now, autistic students face barriers to their success — and they know better than anyone else what steps colleges and universities can take to dismantle those barriers and create truly inclusive communities. We hope you’ll check out these resources and share them with people in your life who might find them useful.
COVID-19 changed the way we live. We do things differently to stay safe from COVID-19. We stay in our homes a lot. We have to wear masks when we go out. It can be harder to get the services we need. How will things get back to normal?
The COVID-19 vaccine will help!
The COVID-19 vaccine is a shot that keeps people from getting sick with COVID-19.
COVID-19 is especially dangerous to people with intellectual and developmental disabilities — but too often, the facts about COVID-19 are not shared in ways that are accessible to us. That’s why ASAN has released this video about the COVID-19 vaccine. This video is available in both English and Spanish and answers questions like:
- Why should I get the COVID-19 vaccine?
- What will getting the vaccine be like?
- Is the vaccine safe?
- When can I get the vaccine?
- Do I still need to wear a mask after I get the vaccine?
In English: Â Â https://www.youtube.com/watch?v=KHgCKyNtzDY
In Spanish: Â Â https://www.youtube.com/watch?v=cff3iKinxnw
Videos not showing up for you? View them here.
We also have a plain language factsheet about the COVID-19 vaccine. It is available in English and Spanish. You can find it here!
We hope that by learning more about the COVID-19 vaccine and sharing this video, everyone can do their part to beat the virus and keep our community safe.
ASAN is pleased to commemorate the 10th annual Autism Acceptance Month this year. Over the past ten years, autistic advocates have transformed our society’s conversation around autism — but much remains to be done before we can truly fulfill the promise of autism acceptance.
Autism Acceptance Month was created by and for the autistic community to change the conversation around autism, shifting it away from stigmatizing “autism awareness†language that presents autism as a threat to be countered with vigilance. Ten years ago, when Autism Acceptance Month started, advocacy organizations run by non-autistic people spoke openly about working towards a future in which “autism is a word for the history books.†In contrast, autism acceptance emphasizes that autistic people belong — that we deserve welcoming communities, inclusive schools and workplaces, and equal opportunities. In the last ten years, we have seen real progress. Many autism organizations run by non-autistic people initially resisted “acceptance†language; over time, some of them have come to adopt it. We welcome this change.
However, acceptance is an action, and it goes beyond changing the language we use. In order to truly practice autism acceptance, autism organizations must also change how they think about autism, and how they work to represent autistic people. Working toward acceptance means recognizing autistic people ourselves, not just our family members, as a core constituency. It means including autistic people in meaningful leadership positions throughout an organization — on staff, in senior leadership, and on the board. It means aligning advocacy and research priorities with the priorities of the autistic community. Advocating for things that autistic people routinely describe as harmful, such as Applied Behavioral Analysis, institutionalization, or research on “curing†or preventing autism, is not autism acceptance. Autism acceptance means standing up against those who promote debunked anti-vaccine rhetoric, attack self-advocates, or work to expand segregated settings like sheltered workshops and institutions.
Autism acceptance means respecting the rights and humanity of all autistic people. It means centering the perspectives and needs of autistic people with intellectual disabilities, nonspeaking autistic people, and autistic people with the highest support needs — not by speaking over them, but by listening and looking to them as leaders. It means fighting to ensure that the universal human rights of all autistic people are respected, including and especially the rights of those autistic people with the most significant disabilities. And autism acceptance means recognizing the ways ableism and racism interact in our society, following the leadership of autistic people of color, and making anti-racism a core part of our work. In particular, while police violence continues to threaten the lives of Black autistic people, some autism organizations focus on police training as a solution; this is ineffective and ignores the role racism plays in police violence, rather than reducing the power of police to do harm.
We welcome the necessary and long-overdue language changes increasingly being made by other autism organizations. But without understanding acceptance as an action, autism organizations led by non-autistic people will continue to lag behind the rest of the developmental disability community when it comes to reaching the goals of community living and inclusion. It is past time for parent- and provider-led autism organizations to make real, structural changes, and join self-advocate-led organizations in working to make acceptance more than just a buzzword.
It isn’t just autism organizations that need to put acceptance into practice. ASAN was glad to see recent improvements to the Autism CARES Act, including increasing the number of self-advocates who are members of the Interagency Autism Coordinating Committee (IACC). However, we need true parity on the IACC, and a rebalancing of research funding to align with the needs of autistic people ourselves. We applaud the White House urging the public to “learn more about the experiences of autistic people from autistic people,†in this year’s proclamation for Autism Acceptance Day. Still, there is much more to be done. We will continue to work to ensure that autistic people have equal rights, opportunities, and access — in health care, education, housing, employment, and throughout our communities.
We have made real progress over the past ten years of recognizing Autism Acceptance Month. The conversation about autism has changed, thanks to the hard work of the autistic community. But there is more to be done, and words must translate into action. As autistic self-advocates have said from the beginning, we must move beyond acceptance — to representation, celebration, and liberation. Acceptance is not the end goal. It is the baseline, a call to do better, the starting line of the marathon. We can and must go beyond that starting point and run the race, even if we cannot even imagine the finish line. Only by continuing to move forward can we create the world our community deserves.Support our work
The Autistic Self Advocacy Network seeks to advance the principles of the disability rights movement with regard to autism. ASAN believes that the goal of autism advocacy should be a world in which autistic people enjoy equal access, rights, and opportunities. We work to empower autistic people across the world to take control of our own lives and the future of our common community, and seek to organize the autistic community to ensure our voices are heard in the national conversation about us. Nothing About Us, Without Us!