April 2nd marks World Autism Awareness Day. There are still so many misconceptions about autism, particularly about autistic adults, and the world at large often deeply misunderstands what living with autism is really like.
According to the National Autistic Society, one in 100 people are on the autism spectrum and there are around 700,000 autistic adults and children in the UK. No two autistic people are alike, and the levels of support and care needed vary widely between individuals. “Masking” is also a common problem, where autistic people are forced to hide their traits and behaviours in order to pass as neurotypical; this can result in anxiety, depression, and burnout. As our understanding of autism changes, so does the language we use to talk about it, and our knowledge of how it often intersects with other parts of people’s identity and mental health.
We spoke to a few families in Herne Bay, and they shared their stories of autism with us. Names have been changed to protect anonymity.
Megan has two children who are both autistic. She describes their journey to get a diagnosis as easy, but only once she was able to use private healthcare.
“For a diagnosis for both of my children I went private,” Megan says. “I was turned down for one of my children by the NHS, and the other needed something in place as soon as possible, so waiting wasn’t an option. Having gone private, it was a very easy process. Admittedly it was somewhat expensive, but for such a caring and in-depth report I couldn’t have asked for much more. The support and care we received and the quality of the assessment for the children was amazing – they didn’t even realise they were being assessed.”
Although the initial process of getting her children assessed was smooth sailing, Megan ran into trouble afterwards when she tried to access any kind of support and found that the services fell very short indeed. “Getting support afterwards was very tricky. I had hoped that when I got the diagnosis and reports that things would be very straight forward and smooth, and I can assure you that’s not the case at all. Help is very scarce, and the only good source of support I’ve had is from SNAAP (Special Needs Advisory and Activities Project).”
As the mother of two children with the same diagnosis, Megan has first-hand experience of the wide variety of ways in which autism can present itself. She says, “If I could ask for one thing for people to be more aware of, it would be that no two children are the same. I have two diagnosed children and both have very different needs and behaviours, especially when we’re out in public.”
Martin has two daughters, Honey and Lydia. Honey was diagnosed with autism at an early age, but Lydia’s less dramatic symptoms meant she slipped under the radar and has not yet received a diagnosis.
Martin explains, “We were very lucky in that we managed to get a diagnosis for Honey when she was only two years old. Joy Lane School in Whitstable had an autism unit and she joined there when she was four. She stayed there until she was eleven and she had to go onto a more senior school. We eventually decided that she would go to Stone Bay School in Broadstairs, and she absolutely loved it there; she stayed there until she was nineteen years old. So in terms of support from school we were very lucky indeed.”
Honey has severe OCD as well as autism, and her needs meant that she would have to live somewhere with round the clock support, but the social worker assigned to her case proved less than helpful. Honey was promised accommodation and care in various different establishments, but each placement fell through until she finally found a place through the Kent Autistic Trust. She now lives in her own flat and receives day care from Manor House, and most importantly, she has the structure and routine in place that allows her to thrive.
Martin acknowledges that they’ve been very lucky over the years with the support they’ve been able to find for Honey. However, he adds, “The person I think this has been hardest for is Lydia.” Lydia is six years younger than Honey, and the severity of Honey’s symptoms meant that Lydia’s own struggles unfortunately were not noticed, and the family believe that Lydia herself is on the autism spectrum.
For a long time the model of autistic diagnosis has been based on how the condition presents in boys and individuals assigned male at birth. Autistic women are more likely to be written off as shy, anxious, or a daydreamer; and due to the way girls and boys are socialised, these traits are accepted rather than remarked upon.
Many autistic people want to move away from “autism awareness” to “autism acceptance”. This April we hope that more and more people will be ready to see autism as a difference rather than a disadvantage.