“While Mickey was still in school, another parent of a child with Autism told me, ‘They spent 16 years educating my kid to the best of his ability so that he could spend the next 60 years stuck at home watching TV’.”
On 2 April the world will celebrate the 8th anniversary of World Autism Awareness Day (WWAD), a day designated by the United Nations (UN) to encourage individuals and organisations to improve their understanding of autism and raise awareness about the global autism community. Ahead of WAAD 2016 Ban Ki-moon, UN Secretary General, announced:
“On this […] Day, I call for advancing the rights of individuals with autism and ensuring their full participation and inclusion as valued members of our diverse human family.”
Autism is a still a fairly misunderstood condition and one that is surrounded by myths and misconceptions. While people are beginning to become more aware about the issues faced by children with autism, few understand the challenges faced by young people who also live with the condition as they leave school and enter adulthood. Adults with autism often face challenging obstacles within employment, as well as further education opportunities. They also struggle with boredom, loneliness and a lack of social inclusion, which can be particularly difficult during those prime years.
Liane Kupferberg Carter is a celebrated journalist, writer and advocate for the autism community. She has written for more than 40 publications and is the author of the 2015 memoir ‘Ketchup Is My Favourite Vegetable: A Family Grows Up With Autism‘, in which she describes her experiences raising her son Mickey, a 22-year-old young man with autism.
The inspiring Liane speaks to IPF about understanding autism, misconceptions, and the challenges faced by her son Mickey as he enters adulthood.
Understanding and diagnosing autism
As Mickey approached his first birthday, I noticed his language wasn’t developing the way it had with my older son.
Mickey was a loving, affectionate toddler, but by the age of 18 months, he only had three words.
He was diagnosed with a speech and language disorder. No one said the word “autism”. Over the next few years, we were given varying diagnoses: communication disorder; sensory processing disorder; multi-system developmental delay. He wasn’t diagnosed as being on the autistic spectrum till he was five.
The clinical definition of autism is a complex disorder of brain development, characterised by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviours. Although Mickey is verbal, he struggles with both expressive and receptive language. He processes sensory experiences differently but he has many strengths. He’s a visual learner and notices small visual details others often miss. He has startlingly good memory skills and a terrific sense of direction.
Common misconceptions of autism
Once you’ve met one person with autism, you’ve met one person with autism. Everyone is different.
You should assume that someone who’s autistic has the same needs and desires as someone who isn’t on the spectrum. Some autistic people may have difficulty expressing themselves; be patient. My son is very social; he loves having friends. Complex conversations are challenging for him, but he’s smarter than his spoken language sometimes suggests.
There’s a persistent myth that autistic people lack empathy. The reasons are complicated – a convergence of media, popular culture, and ignorance. In the 1980s, British cognitive psychologists coined the term “mind-blindness” for what they considered the core deficit in autism: the autistic person’s inability to employ a “theory of mind”. Meaning, essentially, that autistic people are incapable of imagining anyone else’s thoughts and feelings. I think that’s way off base.
While it’s true that autistic people often have a harder time reading social cues, it is quite a leap to assume that a person’s inability to interpret nonverbal cues means he doesn’t care and has no empathy. Mickey has a very well-developed sense of empathy, as do many of his friends on the spectrum.
I think you always have to take into account that people on the spectrum may have a high degree of anxiety. Mickey struggles with new experiences. For example, he’s uncomfortable with loud music, flashing lights and crowds of people. We encourage inclusion wherever and whenever possible, but we’ve learned to do so in small and manageable bites in new situations, until he builds up a level of comfort.
Challenges faced by young adults with autism
Unemployment is a huge problem. In the United States, young adults with an autism spectrum disorder are far less likely to continue their education or get a job after high school when compared to young adults with other disabilities.
According to a 2012 study in the journal Pediatrics, two years after graduating school, half of young autistic adults had no paid job experience, technical education, or had been to college. Autistic adults struggle to obtain social services; they often have concurrent medical problems such as epilepsy. They face a paucity of affordable, safe housing and employment opportunities. They also grapple with a lack of social opportunities, boredom, and most of all, loneliness.
While Mickey was still in school, another parent told me, “They spent 16 years educating my kid to the best of his ability so that he could spend the next 60 years stuck at home watching TV.”
Additionally, a newly released study conducted by Sweden’s Karolinska Institute and published in the British Journal of Psychiatry just found that, on average, autistic adults die 18 years younger than their non-autistic counterparts.
The leading cause of premature death in autistic adults isn’t due to heart disease or cancer that are the main killers in the general population. It’s suicide.
Currently Mickey lives with us, and will do so for the foreseeable future. Eventually we hope he will transition to a group apartment or house with peers. He loves to socialise, and has many friends, both from his time in school and summer camp, as well as new friends he’s made in the day program he attends.
Parenting
As the parent of an autistic adult, my biggest daily challenge is helping my son manage his anxiety. In a larger, societal sense, I’d say the greatest challenges are issues related to employment, housing, medical care, and social acceptance.
Even though he’s an adult now and often able to ask for what he needs, I still need to be his advocate. Balancing authority and independence is complicated.
While I respect Mickey’s need for independence and promote it as much as possible, the reality is that he also has a seizure disorder. He will probably always require a degree of supervision to keep him physically safe.
Labelling of people with autism
When Mickey was 19 months old and saw his first speech therapist, she said he had a “mild” delay. Several months later, a different evaluator told us the delay was “severe”. Mickey hadn’t changed; he was still the same loving little boy. Nor had his challenges changed. What had changed? The evaluator.
People are looking for quick and easy labels when they ask the question: ‘Is Mickey high or low functioning?”
How well does anyone function all the time? All of us are high functioning in some ways and less so in others. It’s circumstantial. Autistic or not, we all have a mix of strengths and challenges. If you can do calculus but can’t tie your shoes, are you high or low functioning?
Mickey doesn’t turn on the stove to cook for himself yet. But he’s adept at making his own sandwiches and reheating food in the microwave, so he won’t starve. Is that high or low? Just because an autistic person can speak, make great eye contact or perform academically doesn’t mean he doesn’t also have major social or behavioural challenges.
Raising awareness about autism
Twenty-something years ago, Mickey’s diagnosis was the earthquake at the centre of our lives. You couldn’t go online to look things up, because the Internet didn’t exist. There was no book on parenting called, “What to Expect When Your Child is Autistic.”
I didn’t know much about autism; not too many people did in those days. I was desperate to learn, but there was so little information out there.
I’ve been a journalist for many years and last year I published my memoir ‘Ketchup Is My Favourite Vegetable: A Family Grows Up With Autism’. I wrote the book I wish I’d had when my son was first diagnosed. I wanted to help other families avoid the mistakes we made, such as searching for miracle cures and falling prey to snake oil salesmen, and to mitigate some of the fear and isolation families feel.
I wanted readers to see that it is possible to create a normal family life, even when you’re dealing with the extraordinary needs of an autistic child. To not only survive, but to thrive.