World Autism Acceptance Week is 26 March to 2 April 2018.
World Autism Acceptance Day is April 2nd. It was initially a United Nations initiative.
In the UK, materials are available from the National Autism Society.
1. What is Autism?
Swiss Psychiatrist Eugen Bleuler used the term, ‘Autismus’ in his work in the early part of the 20th Century. The meaning is essentially as ‘otherness’.
Autism was observed properly in children in the 1930’s and 1940’s by Hans Asperger and Leo Kanner in separate studies. They had a diagnostician, Georg Frankel, in common, as he left Europe for America to avoid the Nazis. He may have influenced Kanner’s work.
It is also thought that research in the 1920’s in the Soviet Union came to similar conclusions.
The English language medical model of ‘infantile autism’ followed on from Kanner’s research.
These theories were challenged in the 1970’s and 1980’s by Lorna Wing in her research. Uta Frith fully translated Hans Aspergers research papers around 1990.
The diagnostic basis were formalised in the late 1990’s and is now seen as a spectrum condition with diagnosis formalised as Autism Spectrum Disorder. (ASD).
2. Why Awareness?
It’s a prevalent condition in about 1% of the population. That could be around 700,000 people in the UK.
As a Neurodevelopmental Disorder condition, not a disease, it’s not something that can be cured as it’s a essentially a human difference like eye colour or skin tone.
It is not related to environmental factors as hypothesised by discredited researcher Andrew Wakefield who caused a panic over effects of childhood vaccines.
Symptoms vary and there are different degrees of learning disabilities or co-morbid conditions that can be associated with the principal ASD diagnosis.
Awareness of prevalence and the difficulties with social communication, social understanding and social development can help Autistic people to be accepted.
3. Why not Acceptance?
Autistic advocates would prefer Acceptance and for the concept of neurodiversity to become as known and accepted as gender equality or sexual preference equality have been in recent years.
It’s a neurological difference and if other human differences can be positively promoted in society, why not seeing the world differently?
It’s the next step in Equality thinking for many.
4. Is ‘Autistic’ or ‘Person with Autism’ better?
For me and many others it’s ‘Autistic’, whilst I understand person centred language, I don’t carry my Autism with me.
For me, Autistic Person is fine. Person with Autism isn’t.
Research suggests split views on terminology.
5. Should I ‘Go blue for Autism’?
You may see Facebook pictures with the above filter. By doing so you are supporting the American Organisation ‘Autism Speaks’.
Autism Speaks is criticised in the US by ‘Actually Autistic’ advocates because of their previous research focus and support for families and autistic people.
So please don’t ‘Go Blue for Autism’ especially if you’re in the UK.
A grassroots ‘Red Instead’ campaign exists online. I certainly support it myself.
‘Light it up Blue’ attempts to light landmarks and buildings in blue, again it’s Autism Speaks and it’s not an international campaign supported across all countries by all Autism organisations.
I think it’s inappropriate in the UK, sadly some building owners have participated in the UK.
6. Should I post a jigsaw logo on social media in support?
No. There’s not a recognised worldwide symbol.
The Autism Awareness Ribbon of the American Autism Society uses the puzzle piece design and although colourful and distinctive is based on a 1960’s jigsaw design that the UK’s National Autism Society initially used.
The puzzle piece or jigsaw piece was thought to represent the mystery of the condition and isolation of a child with autism.
Significant that the NAS moved away from the imagery as have others, such as the American Journal ‘Autism’.
It is offensive to many advocates, although it remains popular amongst some parents.
My thinking is that I have nothing missing, neither do my sons, and that we’re not a mystery or a puzzle either.
A better symbol for neurodiversity is the infinity sign, it has been used with multicoloured or rainbow variants.
7. ‘It’s just a thing boys have.’
Increasing numbers of women and girls have been diagnosed in recent years and some of the best actually autistic advocates are female and have a brilliant grasp in describing the condition and difficulties in writing.
Diagnosis for girls may be trickier as they have been better at masking or disguising the condition.
8. ‘Rain Man’
Quite a film and performance from Dustin Hoffman as Raymond Babbitt, but his savant character was based on Kim Peek, who was previously diagnosed with autism but thought to have FG syndrome, a genetic defect.
The ‘Rainman’ shorthand description isn’t accurate and isn’t the experience for autistic people and the parents of autistic children.
Often the words as used as an insult.
9. ‘Sheldon Cooper / Saga Noren’
Sheldon from ‘The Big Bang Theory’ is often thought as a high functioning autistic character and although the portrayal by Jim Parsons may point to many of these traits, the show has never made reference to him officially having Asperger’s Syndrome or Autism.
Similarly, Saga Noren in ‘The Bridge’ or ‘ Bron/Broen’ is a Swedish detective played by Sofia Helin has many traits and signs of autistic behaviour but the show never specifies her as autistic.
The characters may point toward autism and display signs of things that autistic people recognise, but are not specified in their shows as diagnosed autistic people.
Recent TV shows such as ‘The A Word.’, ‘Atypical’ and ‘The Good Doctor’ have addressed autism more directly and not just as a character quirk in a drama.
Possible that more TV shows and films will address matter in future.
More positive representation can be in reality shows such as ‘The Autistic Gardner.’
10. How can I help?
Give to local autism groups that fund or provide services to families and autistic individuals.
Other charities for often horrible and scary, but ultimately curable, illnesses get more exposure and more funding.
Autism is lifelong and affects a person from early childhood onward. It affects their ability to work or study and studies show lower levels of employment and higher suicide/harm risk as well as lower life expectancy.
Council Social Care and NHS services aren’t there in many places and donating can help to fill the gaps
Read Steve Silberman’s ‘Neutrotribes’ or look at information available online about ASD, Autism and Aspergers.
Ask your MSP, MP or similar what they are doing to help. Raise Neurodiversity with others. See how families are affected and the help that can be given.
Be a friend.
Support those you know or maybe learn enough to know ‘that kid’ in the supermarket or train might not be naughty, just different.
Read #ActuallyAutistic posts online.