Top Ten Lessons from Youth with Autism
-by Sue Robins, Family Advisor, Sunny Hill Health Centre for Children (and Mom)
I had the honour of attending the Youth with Autism Panel on October 5. It was organized by Elizabeth McWilliams Hewitt, a Behaviour Consultant who works with families who have children with Autism. She’s also an instructor with the Child, Youth and Family Studies program at University of Fraser Valley.
The intent of the evening was to hear from the experts about what it was like to live with Autism – and of course, those are the people who are living with Autism themselves. There were five youth presenters, ages 14-20, and one young lady who spoke about her experience having a service dog. The second half of the panel included five parents who have children with Autism.
Here are my top 10 take-aways from this illuminating evening – first, from the youth:
- The youth had very vivid memories about when they first found out they had Autism. They spoke about how exhausting the experience was, and one young person described it as being a ‘grueling, horrible, tear-filled day.’
- The #1 thing that frustrated the youth was that they felt that sometimes when health providers see one child with Autism, they think they know about all kids with Autism. They emphasized that nobody is the same, even if they have the same diagnosis. “It is like fingerprints,” said one insightful young man.
- I enjoyed the focus on the youths’ superpowers. They were impressive with their deep knowledge of a variety of subjects – like Star Wars, horses and Lord of the Rings. It reminded me that starting with strengths is always the best approach.
Here are my take-away messages from the parent speakers:
- One parent spoke of disliking the ‘low-functioning’ and ‘high-functioning’ designations. She said – what if we just think of people as individuals with Autism who have both challenges and superpowers?
- What they found most difficult was people who question the Autism diagnosis based on stereotypes, people not believing them, people not trusting them as a parent or downplaying what they have to say.
- They shared that being a parent of a child with Autism is unbelievably exhausting – they are always ‘on’, from the minute they wake up until when they go to sleep.
- One parent had an important message, articulating the feelings of shame and embarrassment, and the mourning involved with the loss of the family they thought they were going to have.
- Specifically for assessments, the parents talked about frustration about not feeling heard, not feeling like they knew about their own children, providers not taking other people’s insights into consideration (like SEAs or Behaviour Consultants), and working with professionals who don’t consider that the families are the experts of their children.
- They said what is helpful professionals who are curious, are open to asking questions, recognize they don’t know it all, those who do more listening than talking when working with a child, who connect with the child and show that they care about child they are working with.
- The panel session closed with an important point for health professionals and educators: please don’t judge a family, even if you think you’d do things differently as a parent. People are doing the best that they can.
My ‘ah-ha’ moment was realizing that validating both the struggles and the awesomeness of families and children are equally important. This evening taught me so many valuable lessons about the lived experience, and reminded me that it is an honour to bear witness to a person’s story.