Everyone knows Carly Fleischmann, the Toronto teen with autism who was unreachable until she typed a message on a computer at age 10. Here her dad Arthur, author of Carly's Voice: Breaking Through Autism, talks about the challenges and joys of raising her, and where she is today.
BLOOM: Can you update us on how Carly is doing now?
Arthur Fleischmann: She’s enrolled at the University of Toronto, Victoria College, and she’s taking a couple of courses to start: English literature and a technology seminar. She’s living in residence on campus. She has two roommates in a three-bedroom suite. We ran an ad in the U of T job bank.
One is a PhD student and the other is a mature third-year student. They get room and board and a small monthly stipend and one has to be home between 9 p.m. in the evening and 7 a.m. We had eight responses and Carly met with them and picked the two that best matched with her personality. She has daytime support from two people on two shifts. So far she’s doing great. She’s really thriving. She’s signed up for the school newspaper and student council and has a one-on-one relationship with the dean.
This is completely out of anything we would have expected for her. We never would have expected her to go on to school of any sort given her early prognosis and in in her later years, we didn’t expect she would get here so quickly. We didn’t know she would be able to handle the stress and changes of university.
BLOOM: As a dad, what were the greatest challenges when Carly was younger?
Arthur Fleischman: Initially it was just basic: managing life. Carly didn’t sleep and she didn’t stop moving and her behavioural issues were the main thing. We were exhausted and getting through the day was the biggest challenge, to be honest. And then we were dealing with the emotional fallout of not really knowing what life would hold for her and feeling there was no sense of hope.
BLOOM: You’re very candid in your book about the emotional and physical exhaustion. How did you manage those sleepless nights given you had to head up a successful ad agency the next day?
Arthur Fleischmann: I was younger and had a lot of energy. I was functioning on two to three hours of sleep at most and I don’t think I could do it today. It was a blurry period for me. I did take care of myself with nutrition and exercise and that really helps. Often people in these situations gain weight or drink too much or do things that make it worse, whereas I kept going to karate with my son and started at the gym.
BLOOM: It sounds like work was a good distraction for you.
Arthur Fleischmann: I had the night shift with Carly and the office during the day and I’m a good compartmentalizer. So as long as I could focus on those two things, and the other two kids were good, I was okay.
What I do for a living is so different than the stresses of being at home. I have a great environment at my office, a lot of positive energy, with fantastic partners and great clients. So while it’s a stressful job, it comes with the benefits of that positive energy and a sense of accomplishment.
Tammy was at home during the day doing the business of running Carly’s life, doing the invoices and scheduling of therapists and taking her to doctor’s appointments. Tammy is a real autism tiger. She jumped all over everything as a way of controlling it. I felt better if I could do a good job with Carly one-on-one at night, and then escape to work or workout and support the family and have a career.
BLOOM: How important was respite for you?
Arthur Fleischmann: It was critical. You come to a breaking point. You haven’t slept, you’re exhausted, your other kids need you. But it comes at a very high price tag because you feel very guilty.
Some of the places are good, but they’re not great. It’s not like sending your kid to the Ritz for the weekend. You can’t even kid yourself that it’s like summer camp. They tend to be worn-out group homes or more institutional facilities. But it’s 'good enough.' The other days of the year we were trying to do way better than ‘good enough’ for Carly, so if a few weekends a year she was getting good enough, that’s how it had to be.
BLOOM: What was it like when Carly started expressing herself in writing? The media made it look like her breakthrough was sudden.
Arthur Fleischmann: The American media did that. In reality it came after many, many years and after hours and hours of work. She had worked very hard with flip cards and communication books with a speech-language pathologist for eight years. And once Carly started writing, it was simplistic in the beginning: two to three word phrases and it might take an hour to produce. She felt the touch of the keyboard was uncomfortable so it was very hard. And it still is. Word-prediction has made it a little easier.
BLOOM: As Carly began to express yourself, did anything she wrote surprise you?
Arthur Fleischmann: The surprises also came in layers. First was her sense of humour. Psychologists and doctors will tell you that humour is indicative of a sense of intelligence and of levels of empathy. You have to understand things in non-‘black and white’ terms, which kids with autism usually lack. So Carly could see the different layers of humanity and had the intelligence.
And with that came her demonstration of empathy. When her speech therapist’s mother died, Carly wrote her an e-mail saying I’m sorry to hear your mother passed away. She was 11. And then she went on to wanting to do fundraising efforts for those less fortunate. I would have expected her to think of herself as most unfortunate. So to see her with that kind of perspective in life was really gratifying and surprising. And each year was like a layer of an onion coming off, with greater levels of intelligence and creativity underneath. Every year there was something new.
She’s done some really big things with social justice and social media initiatives that blow us away. And her desire to connect with celebrities and get her voice out there is self-driven. She had to figure out how to do it which takes remarkable savvy for anyone, much less someone who is allegedly impaired in some way.
BLOOM: Many of the moving parts of your book centre around your recognition that Carly couldn’t live with your family full-time at home. I think there’s a stigma in our culture about talking about residential care and that makes it difficult for families. What role did it play in your lives?
Arthur Fleischmann: At that point her behaviours were really challenging and the lack of sleep was starting to pile up. Having her out of the house for three nights a week brought us a sense of awkward normalcy. You could go to bed at 11 and be assured of sleeping until 6. You could go out and see friends. It comes with the big guilt price. It was terrible for her, but it probably saved us. You have to look at what is the alternative. This is a wonderful solution if it means a few days a week life isn’t perfect for your kid but the rest of the family unit can stay intact.
BLOOM: What would have happened had you not had the option of having Carly in residential care for part of the week?
Arthur Fleischmann: She would have ended up in a group home full-time, without a doubt. And she wouldn’t be writing. She wouldn’t be speaking. And she’d be heavily medicated. The biggest issue is the behavioural challenges and they would have run unchecked and been exacerbated. I think about the amount of human suffering she would have felt.
The best way to combat obsessive compulsive disorder is cognitive behaviour therapy and that requires communication. If she was in a home full-time and they were trying to fix things that they observed, they’d be fixing the wrong things. They might think she has aggression issues. Whereas we’ve learned that when Carly would slap herself there were two reasons: she had physical discomfort, like pins and needles, or she was trying to stop herself from doing something she knew she wasn’t supposed to do.
Even today most of our discussions are around helping her manage her compulsive behaviours. And having the feedback from her allowed us to better diagnose and treat it. She’s very active today in the development of strategies. She knows what her triggers are and can avoid them. For example, ‘I’d love to go to this event, but I know it sets off this behaviour, so I won’t.’ She’s using strategies such as breathing, or iPad schedule apps, that lower the anxiety and make the urges dissipate. She has a scheduling app that gives her tremendous structure, it helps her a lot, breaking her day down. She finds that helps manage anxiety and she knows what’s coming next.
BLOOM: What if Carly hadn’t had the breakthrough in communication that she did. Would you have been able to focus on your non-verbal connection and come to some form of acceptance?
Arthur Fleischmann: I guess you would just accept it as a given. If someone is sight impaired, you stop thinking they will ever see. But in a way you never really get over that because you go through these milestones with your other kids and she would still be there at home or in a group home.
BLOOM: How independent is Carly now?
Arthur Fleischmann: Carly has come to the acceptance that she’ll always need support of some sort, but she thinks of these people as assistants, instead of therapists. And she’s thinking of strategies for herself. For example, she’s said if boys come over and are hanging out in her room studying, she thinks the door should be left open, and she wants to make sure her roommates check in on her. She’s allowed to drink a bit but she doesn’t want to have more than one drink because she doesn’t feel the effects. Dating is a possibility.
BLOOM: What is Carly’s goal now?
Arthur Fleischmann: She wants to be a journalist. Her schooling may take eight years if she takes two classes per semester. Between consulting to organizations that support autism, and research and writing and blogging, she may actually have a career.
BLOOM: How have you changed as a result of having Carly in your life?
Arthur Fleischmann: I don’t know that I’m ready to be reflective yet. Some of the things would be obvious, like patience and thankfulness. I think I was a product of the '80s where greed was good. I think while we all like nice things, I’m happier with small wins now. And I can definitely look at people with a greater sense of empathy than I could before. On the flip side, I no longer accept the status quo as the only answer. If someone says ‘We can’t do that’ I know it’s just not true.
BLOOM: Was it challenging for you to be candid in your book knowing that Carly would read it
Arthur Fleischmann: Carly was the one who wanted the story out there. A couple of media stories were told and we could see how well they resonated with people around the world. People said her story brought them some insight and hope and help. We were approached to write the book. I said to Carly, “The only way to write this book is to tell the whole truth,” and Carly said “Write it.” Of course I ran passages by her and some things she wasn’t comfortable with were edited out.
BLOOM: Some adults with autism oppose the use of applied behavioural analysis (ABA) or other therapies they say are used to 'normalize' people with autism. How do you feel about this?
Arthur Fleischmann: I leave each to their own decisions, but as parents you know what’s best and you do whatever you can to make your kid as able to learn and communicate as they can. A lot of people writing these pieces are not severely autistic. They already have a basic quality of life that is far greater than the quality of life of a child who can’t speak and injures herself and destroys things. There’s no way that’s a good thing. No child feels good about scraping their skin till it bleeds or pulling out all of their hair. As parents, you do what you can to get to basic functioning and communication.