Stranger in a strange land…
It can feel like being trapped, even at home. Many autistic people find social life hard even with their own family, especially when the people around them don’t understand autism well. Out in public, things can quickly get much harder.
A Survey that Raises Concerns
A survey by The National Autistic Society Scotland, released in April 2016 (when this article was first published), found that as many as two-thirds of people with Autism Spectrum Disorder feel socially isolated. The NAS released it ahead of World Autism Awareness Day and launched a new public Autism Awareness campaign (Too Much Information: Why the public needs to understand autism better) to help increase public understanding of autism.
Jenny Paterson, Director of campaign, NAS comments, “As many as Two-thirds of people with Autism would agree that they feel socially isolated, their universe tends to become smaller and smaller as they continue to avoid the staring and tutting. However, a majority of the public doesn’t intend to be unkind.
They just don’t see the underlining characteristics of autism – all they see is a ‘strange’ man pacing back and forth, or a ‘naughty’ girl throwing a tantrum. They don’t spend enough thought on how negative thoughts or judgmental reaction could hurt a person who is already a victim of social isolation.”
Jenny does not want to accept a Scotland where autistic people and their families are shut out of social life, which is why the campaign matters so much.
About the Survey
- The report is mainly based on an online survey run by the NAS between May and July 2015. It received responses from 7,532 people across the United Kingdom, with 673 (or 9%) living in Scotland.
- Autism is a lifelong developmental disability that affects how a person experiences the world and interacts with others. Many autistic people find everyday social situations hard, partly because their brains may not filter out the huge range of sounds, smells and sights around them.
- Autistic people take in information differently, so being out in public can be overwhelming. This can lead to an autistic meltdown (READ: What does Sensory Overload feel like), an involuntary response to overwhelm, not deliberate behaviour. It may involve kicking, vocalising distress or crying.
- Social isolation is a common experience for autistic people. At the time, more than one in 100 people were estimated to be autistic (1 in 68 in the United States), including around 58,000 people in Scotland, and the report found more than 65% of them feel socially isolated. It points to a lack of public understanding and empathy as the real reason behind this feeling of being left out.
The Fine Print
- 90% of the families surveyed said people stare at their autistic children’s behaviour. Almost three-quarters had experienced onlookers making disapproving sounds or gestures.
- 85% of those surveyed feel other people often judge them as strange, and 66% say they feel socially isolated.
- Over time, these attitudes can become too much to bear, and families pull back from social life. Almost half (44%) said this had happened to them, mainly because they worry about how people will react to their children. People feel so misunderstood that they withdraw to avoid judgement, stares, or even abuse.
- In Scotland, 66% of autistic people and 68% of parents of autistic children feel socially isolated.
- Half of that 66% feel unable to leave the house most of the time because they worry about how others will react to their behaviour.
- Overall, that means more than 38,000 of the 58,000 autistic people in Scotland feel socially isolated. They avoid gatherings, public spaces and transport, and even health services. This affects the whole family.
The report concludes that by increasing public understanding, we can build a kinder, more autism-friendly community.
What you can do
- If you see a child or adult in distress, offer quiet help or simply give them space. Staring and comments make things harder.
- If you’re a parent, look for autism-friendly sessions at cinemas, shops and museums, and connect with local parent groups.
- Share what you know about autism with family, friends and your child’s school. Understanding is the antidote to isolation.
Hi, I am Shinjini, a professional web journalist from the Asian School of Journalism. I currently live and work in Philadelphia, U.S and my passion includes watching movies, going out with friends and reading. I am also quite a foodie. I have been writing at DW Autism for about a year now and cover specialised topics around Autism Advocacy and Technology and Research developments that can help the spectrum people.
“Shocking”? I struggle to believe that. Most people are perfectly aware of how isolated autistic people are, they simply don’t care because they don’t want us around anyway.
Most people knowingly or not don’t want to be around ANYONE who is not within the norm and just like them. Hence the bullying, abuse even violence directed against autistic people.
Dear Shinjini You are beautiful and i am autistic thank you for experiencing this isolation I have had many friends in high school and college they way i developed social skills is working with my political organizations Amnesty International Coalition for peace action, Stand canada(student anti genocide movement) and so on
I taught myself the six official languages of hte UNited Nations (arabic chinese english french russian and spanish) One of my pet projects is to start a NGO for human rights in Africa (hence I taught myself Portuguese) afrikaans xhosa and zulu for my trip to South Africa and Pashto to defend womewn in Afghanistan
I have lots of empathy I am the state winner of enw jersye in geography published writer I work for the Internaitonal Cirminal Court I have a ling distnace online relationship with a Malawian precious chasowa but unforetunately i never been to africa in my life
(only three continents as of the time of posting North America Europe and asia)
The replies to this post only magnify how much more support there is for men and boys with Autism or Aspbergers than there is for girls and women. And additionally, all of the fundraising, etc….is not equitable for women, which will only magnify and increase the abuse and neglect of women and girls.