'It's a great blessing, to give hope'

Lee Steel (above) is mother to Eric, 18, who is on the autism spectrum, and Avery, 16. She's also the parent liaison at the Autism Research Unit at SickKids hospital here in Toronto. I interviewed Lee about what she's learned raising a child with autism and what she shares with parents just starting down the road. Lee inspires me with her honesty and passion!

BLOOM: How is Eric affected by autism?

Lee Steel: He reads well, speaks and has always had language, but needed one-to-one support through school. He writes like someone in kindergarten and can't tell time yet, but he has an unbelievable memory: he could list off all the songs on the White Album of the Beatles if you asked him. I worry that he’s lonely. He's repeatedly reaching out for friends but not having that much success. He graduated from high school this past June and will do an extra year of high school next year focused on co-op and gaining job experience. He'd like to go to college and for him college is an extension of high school – another place to be around young people.

BLOOM: When was Eric diagnosed?

Lee Steel: He was diagnosed at 3 ½. His preschool had big concerns about him, but I didn't. I knew something was a little different but I had reasons for everything I saw. When I was told he was on the autism spectrum it was an entire shock. Plus, I didn't know what 'autism' meant. I felt stupid to say: "What's that?" so I went home and called one of his preschool teachers. She drove over a book which had a dismal description of autism. It said these children don't have language, they often have to be institutionalized and they can be self-injurious. In that moment, I went from looking at Eric as this little guy I absolutely celebrated with my whole being, to someone I was frightened of. I was beside myself.

BLOOM: How did your perceptions of Eric change?

Lee Steel: What I heard and felt was: 'you're late getting this diagnosis, the windows are closing, and everything is up to you.' A therapist came to the house and said: "For every minute you're not engaging with him, he's in the autistic world." The ‘autistic world’ reminded me of what I’d read in that book. I remember pushing his stroller down the sidewalk thinking 'I have to talk to him all the time.' I ran out of things to say, so I started reading billboards. He looked round in his stroller and the look on his face said: "What the heck happened to you?" Nothing was fun anymore. I wasn’t just Mommy anymore. Now I felt like I had to be a therapist.

BLOOM: What kind of intervention did Eric have?

Lee Steel: I remember going to a workshop at the Geneva Centre and parents there were talking about second-mortgaging their home to pay for applied behavioural analysis (ABA). At the time if you did ABA you paid for it privately. I remember thinking: "We're renting and we're barely getting by." I got a manual on ABA and a bit of coaching and I hired three neighbours with Special-Services-At-Home funding and we did our own home program six mornings a week. I would put the kids to bed at night and then I'd work on a lesson plan from 9 p.m. till 1 in the morning. I knew I couldn't be the teacher, so a neighbour came in for the morning and we turned our dining room into a little school room.

BLOOM: How did that go?

Lee Steel: Everything was a blur. I would run to a drop-in centre in the morning with my daughter Avery, who was a baby, then run back to give Eric lunch, run him to junior kindergarten, make supper, and then do it again. I had this brand new baby girl, but I was so fear-driven that even when I was playing with her, on some level I was thinking: What more do I need to be doing for Eric? I didn't enjoy Eric for the longest time. He was more like a project I had to keep working on.

BLOOM: How did you keep the pace up?

Lee Steel: Well, there was only so much of me to go around. I'm a single mom now. I've noticed that 90 per cent of moms of kids with autism have to become the ‘case manager’ or ‘therapist’ and that puts incredible pressure on a marriage. Play isn't play anymore – it's an extension of therapy. So if dads are roughhousing or playing with their child the way they would normally, the mom may feel she has to correct them: 'This is what we need to do.' It's therapy-driven and dad may feel like: 'I don't even know how to play with my child.' In my case, my health gave out. I ended up getting thyroid disease. I wanted to say 'help' but there was no room for looking after my own wellbeing.

BLOOM: How have your views on autism changed over time?

Lee Steel: My journey has been one of moving from fear to hope. When Eric was about 6 I heard a panel of adults with autism speak at the Geneva Centre. There was an extraordinary man – Ralph – who shared what it was like to be autistic and why, for example, eye contact was difficult. He gave me an insider’s view. I went up to him afterwards and asked if I could speak to him again. "You're reframing how I need to look at this – not as a disease I need to eradicate or cure or change in my son, but to understand that there are gifts embedded in this." Ralph came to my home and talked to me and gave me hope. For the next year every Wednesday night we'd talk on the phone. Ralph and I eventually brought a group of adults on the autism spectrum together to give them a voice. The adults created a booklet – In Our Own Words – which is available at Autism Ontario. Meeting all of those adults and seeing the various ways that autism expressed itself was the greatest contributor to my rethinking.

BLOOM: What did you learn?

Lee Steel: When asked ‘what was the single biggest thing parents could have given you?’ unanimously these adults said 'acceptance.' I remember Ralph said: “I've had to wear so many masks in my life because I didn't think anyone would like me for who I was.” That’s tragic. In the past, I'd think about how unaccepting the world is, and that I needed to help Eric ‘fit in’ so he wouldn't be hurt. My priorities have changed. I'd rather spend time educating people about the strengths and challenges of autism than expecting my son and others like him to be the ones who have to do all the changing.

BLOOM: How did you begin working at SickKids?
Lee Steel: About nine years ago I was asked to share a parent perspective at rounds. Dr. Wendy Roberts saw how this perspective would be valuable to parents and professionals, and over time my role expanded into a full-time job.

BLOOM: What do you do?

Lee Steel: I support parents whose children with autism are part of our research studies - as well as any parent who calls looking for information. Many parents have just received their child's diagnosis. They’ll open up to a parent in a totally different way than they do with a professional. I try to get in hope wherever I can. It’s a great blessing, to give hope.

BLOOM: Do you have a related professional background?

Lee Steel: The only perspective I bring to the job is my experience as a parent: 'This is my experience, this is what I've known other parents to do, this is what individuals with autism say they need.' I feel those on the spectrum who can tell us what worked for them and what didn't work for them are a wonderful window into the modifications and accommodations we need. Why do we guess when we can ask?

BLOOM: What do you hope to convey to parents?

Lee Steel: Parents need to know that they're not alone, there is hope and things do change over time. I encourage them to focus on their child as an individual. I ask them: "Before you heard the word 'autism,' how were you celebrating that little boy or girl? How did you see them?" When my son was younger I didn't realize that the child brings his or her own little spark and need to succeed and be their best, whatever that looks like. Rather than constantly working on changing the child, I see it as fanning the flame that exists within them. I want parents to understand that autism is a condition of strengths and challenges, but to emphasize the strengths. At the same time, I don’t want, in any way, to diminish the very real struggles families may be dealing with everyday. I want them to believe in themselves as parents and to know that no one knows their child better than they do. I want them to know that when they love and honour and accept their child, it sets up a positive dynamic in the home for all of their children, for their own health and for their marriage. I want them to get educated about autism so they know what their options are and how to advocate for their child’s needs. I remind them to look after their own health and wellbeing.

BLOOM: What questions do parents ask?

Lee Steel: Often times a child has just been diagnosed and will be on a wait list for intervention for months. The parents are terrified: 'What can we do?' I like to share hope about how much they can do themselves. I tell them to trust their instincts and not underestimate how valuable playing with their child, encouraging social interaction, and having fun, is. I want them to know they are their child's best teacher and will be their child’s advocate for life, while professionals will come and go. It's hard for them to hear that message and really believe in their own ability, because there's so much emphasis on the child's deficits.

BLOOM: What are other common questions?

Lee Steel: They want to know how to advocate for their child in school. And they want to know what the future looks like. They want to know how our lives are now that Eric is almost an adult. When they talk to me they see there's a shift: I understand where they're at – I remember and relate to the challenges and fears – but I'm in a different place now. A place where somehow you just know you have to accept your child.

BLOOM: What have you learned from your children?

Lee Steel: The resilience of Eric and his tenacity to keep trying – even though he knows he's different and struggles – are an inspiration. He's so brave. That's one of the things I admire so much about my son. Then there’s Avery. Her heart is so big because she had to take this backseat to her brother – even though I didn't want her to and no parents want their child to. But it's created this wonderful individual who has this huge heart for differences of all kinds. I can see my daughter making a huge contribution in some capacity and in some way it's because of her experiences with Eric.

BLOOM: What can parents do early on to focus on their child’s strengths?

Lee Steel: We recently did a person-centred planning exercise for Eric. We brought together this group of individuals who love Eric and we talked about his strengths. It was so honouring of the individual and the opposite of what I spent most of my parenting years doing. Eric and Avery were there. It was focused on inclusion, planning for the future and how these people would help see Eric's vision realized in the future. It was about building circles of support around your child and your family. I wished we had done this when he was little and I share that with new parents. There are agencies such as Plan Toronto that help families develop a plan for their child’s future and create circles of support over the years.

Lee co-wrote this information manual on autism for parents. She can be reached at (416) 813-6127.