It’s April, and that means it’s Autism Awareness Month. Although I prefer to call it Acceptance Month, because most of us are already aware that we exist, but we do not feel like we are accepted by the majority of society.
Three years ago, you would have found me in the Atrium holding a stall, showing a small documentary made by and starring autistic students, and being part of a live panel discussion within the Macroberts Centre.
Today, everything is now online. And there’s advantages and disadvantages to that.
Because online we are able to spread our voices further using various social media channels and other platforms. But at the same time, we are opening ourselves up to the virtual and digital world in which numerous Internet trolls, and cyber-bullies exist.
There has never been a more important time to talk about autism today. In the past, it was easy to throw us under the bus, but now these issues simply cannot be ignored anymore. They are out there, for all to see.
Our responsibility is not to offer an entire education or crash course on autism. The responsibility lies with the rest of society to take our words seriously, and amplify them. In this article, I offer 10 ways to support autistic people, this week and every week.
Avoid organisations such as Autism Speaks and those which advocate for cures
Sadly, there are groups out there which view autism as more of a disease and therefore a hindrance. They have been actively involved in promoting eugenicist methods which seek to eliminate us. Autism Speaks is a notoriously hated organisation.
The Light It Blue campaign began on April 1, 2010 in which numerous buildings in the United States lit up blue. It is associated with Autism Speaks because supporters and volunteers of the organisation opened the day at the New York Stock Exchange by ringing the opening bell.
Autism Speaks dropped the word ‘cure’ from its mission statement back in 2016 after numerous disability rights organisations condemned them for failing to represent autistic people.
And if that wasn’t enough, the organisation promoted the idea that autism was a product of immunisation from vaccines. They have since retracted on this, but given the large presence around the United States, the damage has been done.
The organisation has now changed strategy, and is now in collaboration with Google on producing a genomic database. This database is called MSSNG and can be found online. It is strongly thought of as another form of eugenics.
As they are a powerful lobby to the United States government, they are able to secure funding focused on furthering their mission. It is strongly advised to avoid these types of organisations, as well as avoid lighting anything up in blue on Autism Week.
Avoid organisations and groups which promote Applied Behaviour Analysis (ABA)
ABA is a very controversial therapy. It was first introduced in the 1970s by a psychologist called Ivar Lovass and Robert Koegel and it has been stated as the ‘most effective’ form of treatment by the American Academy of Pediatrics (AAP).
Lovass introduced electric shocks in a 1987 landmark study as an aversive to be implemented into the controversial therapy. The main aim of this was to modify what as deemed as undesirable behaviour. Other aversives included shouting and slapping.
In 2020, electrical stimulation devices were banned by the FDA. However, that has not stopped various organisations from implementing such devices.
In 2021, a JustGiving page created by a group called Kickstarter has received a total of $144,966 to promote a device called a Natural Orientation Inducing Tool (NOIT). It is not backed by any science.
The device emits a beep on the back of the recipient’s neck every 8 seconds. This is achieved without any consent. The aim is to reduce undesirable or ‘annoying’ behaviour. However, it is a form of torture and must be opposed.
It is quite clear that the harmful effects of ABA have continued into 2021, especially with such fundraisers. This is despite outdated research supporting the idea. We therefore strongly advise our allies to #SayNoToABA
Avoid using the puzzle piece symbol
When some people think of autism, a picture of a single jigsaw puzzle piece may come into their minds. This puzzle piece symbol is incredibly harmful.
Organisations which have promoted the puzzle piece include Autism Speaks. However, the autistic community views the puzzle piece as a symbol of being broken.
We strongly believe that the puzzle piece depicts autism as something which is broken and must be fixed by the rest of society. This has led to harmful attitudes and stereotypes which have resulted in autistic people dying.
The use of the symbol has not been eliminated from the Internet or in wider society. It is mostly used by a group of people we call ‘Autism Moms’. This comprises of the parents of autistic children, who often speak for us without our consent.
We strongly recommend our allies do not promote the puzzle piece and instead promote the rainbow infinity symbol.
Avoid the idea that autism is a product of vaccines
In 1988, a British physician called Andrew Wakefield published a study in The Lancet which falsely claimed that the measles, mumps and rubella (MMR) vaccine causes autism.
It has since been the subject of huge controversy between anti-vaxxer groups and autistic groups.
Wakefield continues to push the idea. In 2019 he spoke at an anti-vaccine rally in Poland, and in 2016 he directed the anti-vaccine film Vaxxed: From Cover-Up to Catastrophe.
All this has resulted in one of the most harmful and horrific myths around autism, and it continues to affect all autistic people today.
While the research was retracted in 2010, and Wakefield removed from the UK medical register as a result of a legal proceeding which found he had ‘deceived’ the journal, he still claims his work is not false, and continues to defend it.
The claim is harmful today, and we are the receptors to this.
Recognise the individual autistic person is just one of many
There continues to be this idea that what works for one autistic person, must mean it works for every autistic person. This is a harmful stereotype which has resulted in numerous autistic people not receiving support, and/or dying.
Autism is incredibly complex. Every brain has a different neurocognitive wiring. This means every autistic person will experience the world differently and individually.
For example, one autistic person might be very hypersensitive to spicy foods. Whilst another might actually enjoy spicy foods because they have hyposensitive oral signals.
A one size fits all approach is not the answer here. What is needed is for our teachers, sports coaches, parents, friends, etc to tailor to the individual and accommodate to each of our specific needs.
Support autistic women and girls
Diagnostic criteria for autism focuses primarily on specific traits that have been found in autistic boys and men. Meanwhile, autistic women and girls continue to be turned down for a diagnosis, or be diagnosed later.
The topic of medical misogyny is a complex one, and goes back years to when clinical trials in medicine were only focused on boys and men. As a result, the majority of diagnostic criteria is still focused on these traits, and the National Institute for Health and Care Excellence (NICE) guidelines continue to reflect this.
Currently the Autism Quotient (AQ-10) criteria is the subject of controversy. A 2021 study in The Lancet Psychiatry has discovered an error in NICE guidance in which a score of ‘more than 6’ on the AQ-10 was highlighted, despite clinical research informing that the guidance recommends a score of ‘6 or more’.
This raises concerns surrounding diagnosis of autism in women and girls. It also raises concerns surrounding diagnosis as a whole, but considering the medical misogyny which continues today, this will hit women and girls hardest.
But that’s not all. Autistic women and girls tend to show different characteristics. They are known to be more socially motivated, as well as expressing various compensatory behaviours.
When you hear the term ‘masking’ this is the result of autistic women and girls (and some others) masking their social behaviours in an effort to ‘fit in’ with the rest of society.
It is evident that we need to be supporting autistic women, girls, and other groups such as non-binary and transgender autistic people. There are some good organisations such as Scottish Women’s Autism Network (SWAN) worth looking into for this.
Consume videos, podcasts, documentaries, articles and books written by autistic people
It is not hard to see why we don’t recommend watching Netflix programs such as Love On The Spectrum and it is also your responsibility to avoid promoting Sia’s controversial film Music. In both cases, the media has been scripted by non-autistic people and makes for some very uncomfortable watching.
Instead, we recommend books, TV programmes, podcasts, blogs and videos that have been written by autistic people. Our experiences are far more authentic, and tell a bigger story than anything made by non-autistic people.
In fact, autism in the entertainment and media industries is often thrown under the bus. Countless autistic led projects have been rejected for funding, whilst projects led by non-autistic people have been accepted.
Because the media has a huge sphere of influence, any material which is harmful can be easily spread through broadcasting. If a project absolutely must be led by a non-autistic person, then it must consult individual autistic people rather than any organisations that claim to speak for us.
Similarly, it is not common to find books written by autistic people in shops such as Waterstones. Instead I recommend independent publishers such as Jessica Kingsley Publishers, in which you’ll find brilliant titles such as Sex, Sexuality and the Autism Spectrum by Wendy Lawson who is an autistic author.
Campaign for and support autistic people in politics
It is very clear that various policies can impact autistic people, as well as influence attitudes in society.
Politicians do not often speak on the topic of autism, but they do debate policies which impact a whole range of disabled people, such as social security, transport and education.
However, more recently there has been some progress. In Scotland, there is a current campaign called Our Voice Our Rights which aims to support the implementation of the world’s first Commissioner for Learning Disability and Autism in Scotland.
The campaign is supported by ENABLE Scotland, and Scottish Autism who are passionate about amplifying our voices.
We urge our allies to support this campaign as it will lead the way to ensure better representation for autistic people in Scotland, which will set a good example to the UK and the world as a whole.
Donate to organisations and charities which support autistic people
Whilst there are organisations we strongly advise avoiding such as Autism Speaks, and Autism Society of America, there are organisations, which while they are not 100% perfect, are good.
These organisations include the National Autistic Society (NAS), Scottish Autism (SA), and the Autistic Self Advocacy Network (ASAN) which are the three I recommend.
The NAS does have some questionable history, but it has made a lot of progress, in much more of a better limelight than Autism Speaks. The website contains countless resources, and stories from autistic individuals. It does a much better job at promoting support for autistic people in the UK, and has been vocal during the coronavirus pandemic.
Scottish Autism is a local charity with its headquarters in Alloa. Their mission is to value autistic people in Scotland. The website is accessible and contains resources relevant to Scotland. They often hold good meetings for parents/carers, teachers/staff and autistic individuals themselves.
Unlike the previous two charities, ASAN is run entirely by autistic individuals and therefore is the best resource for autistic people in general. It advocates for the inclusion of autistic people in all issues affecting us.
Please do not be put off by NAS and SA for not being 100% run by autistic individuals. They are still good charities worth donating to, and they do amplify our voices, which is what is most important.
Listen to us
Perhaps the most important point of the article, is simply to listen. It is advised to avoid any performative activism since it may drown out the voices of autistic people who have stories and personal individual experiences to share.
That being said, it is also fine to speak for us with the information that plenty of us have provided, since that amplifies our voices and spreads the word to more non-autistic people who need to hear us.
This Autism Acceptance Week, plenty of groups have spoken over us, hijacked voices, or performed ableist actions.
This is exhausting. But it is also important to keep our optimism going. The progress we have made over the years has been substantial but now we must do more and we cannot afford to give up.
Some groups may already feel satisfied with the work they have done, and may decide that’s all there is to do. This is unwise, since the issues faced by autistic people haven’t gone away.
We urge and plead our allies to continue. Keep listening to us. Keep amplifying our voices. That is one of the best, and kindest things to do for us.