Adam Markell discovered AANE 16 years ago, and we are thrilled that he has been a dedicated community member ever since. He is now a proud husband and parent, and enjoys an active lifestyle of hiking, swimming, traveling, and volunteering. As AANE celebrates its 25th year, we asked Adam to share his thoughts on being diagnosed as an adult, what marriage and parenting is like on the spectrum, and what he would like other members of the autism community to know.
Getting diagnosed…
So I found out after I graduated college that I had Asperger’s. I didn’t talk until I was about five years old and my mother brought me to different doctors. This is back in the 70s, so people didn’t know as much back then. The general consensus was I just had learning disabilities. But I always sort of felt awkward, and I always felt different growing up. But then DSM IV came out around 1994. I was seeing a therapist in Florida in 1997, and that’s when they said, “You have Asperger’s.” I had mixed emotions because I didn’t know as much about Asperger’s then as I do now. It felt like there was an explanation, but on the other hand that just made me feel really different. And I guess it was still my nature: I wanted to fit in. I didn’t tell anyone; it was like this really big secret. But I still just wanted to meet others on the autism spectrum.
Getting connected…
And so it’s getting closer to 2005 and I’m just researching stuff online. There wasn’t nearly as much stuff back then, but I was really fascinated with the AANE website–the information and the social groups, which really didn’t exist anywhere, really, in the United States. I connected with AANE and it was really good. It helped me find a therapist and with job coaching, and most importantly, connecting with other people, because I’d never met anyone on the spectrum.
And with hindsight, looking today, it’s no big deal. It seems like half the people I know were on the spectrum and it’s sort of cool. It’s really great, but it was just different back then. And so I was really nervous. I went to the first social group, and everyone was really nice. There aren’t too many of these moments in life, but it was one of those true “A ha!” moments where the light bulb comes on. And I was just like, “Wow, there are other people like me out there and other people with similar struggles and similar hopes and similar creativity.” And it was just so cool.
As a parent, AANE has been really, really helpful too. I know where to get the right resources and AANE has been really good, like what to talk about with the school for the IEP and connecting me with a really good therapist for my daughter. She is doing great. Because of the work of AANE, she’s had so many more resources and interventions and help. A lot of the struggles that I’ve had growing up, she’s not going to have. And it’s just really great that she’s meeting other kids on the spectrum at her age and that she’s making friends and getting academic help. She’s really smart — just sometimes, she needs help focusing and organizing her thoughts. So she gets that help with organizing her thoughts and the executive functioning and everything else.
On parenting…
I think it’s been one of the more current challenges: being a parent. I think that people on the spectrum — and I shouldn’t speak for all people on the spectrum — they sort of like their space. Some people are afraid of relationships because they’re afraid they’re going to lose that space and not have their privacy. When we were dating and we were first married, it worked out really well because my wife also likes to have her space and privacy because she’s probably on the spectrum. But it changed. You have a child that takes a lot more time being at home and all that commitment, especially when the child is just a baby. It was a challenge at first. We’ve worked things out so that I have some time to travel and explore and can usually take a day to myself. So it’s just a matter of balancing it out so that I spend a lot of time with my daughter and my wife and then a lot of time by myself. That’s probably been the most difficult part.
It’s been really interesting and fascinating, and it’s just been great watching her grow up from birth, from like a beautiful purple blob to the young woman she is now. And see her learn to talk and to walk and her special interests–to foster the interest. She was really into marine life, especially sharks and whales. She wanted to go to the Georgia Aquarium, so we went to the Georgia Aquarium. Because I like to travel, it helps pick where we’re going to go.
On how the thinking about autism has changed over time…
I think in 1997, it was like this big dark secret. But I think even then — I don’t think people would’ve thought it was that big a deal. It was just, people didn’t know about it as much, and it required educating people more. But I think society has come a long way in learning more about it. I don’t think society would have reacted badly even back then, but I think people are more aware of it now. People are aware of the full spectrum–that there’s a whole wide range of issues and a lot of positive qualities. People on the autism spectrum do have empathy and do care but have a hard time sometimes showing it in traditional ways.
Advice to parents…
Celebrate — celebrate the differences, celebrate the special interests. Try to make the child’s special interest your own special interest. Seek help through AANE, through the school system, through whatever works. There are challenges, but neurotypical parents of neurotypical kids have challenges too, so it’s just part of being a parent and it makes life more interesting.
Advice to newly diagnosed adults…
It’s something to be embraced and it leads to so many new opportunities. Just be honest with yourself, for who you are. Be open about it and not ashamed. In some ways it kind of makes you cool being different. And probably most of the people already have suspected it anyway. And reach out: reach out to organizations like AANE and join social groups.
Advice to teachers…
In some ways, this simple combination can just work out so much better. Like my daughter sometimes has a hard time paying attention. They just moved her over to the first row. Sometimes it’s the simple things that really work. And I know that sometimes it’s more challenging. I think teachers should educate themselves and seek out help from their supervisors.
An appreciation for AANE…
I’ve just loved the way AANE has grown over the past 25 years. And I really appreciate the work you’ve done in the past 25 years. And I’m really glad that we’ve expanded online all throughout the country and even throughout the world. But I also hope that we continue to do stuff in person, or once it’s safe to do so, and that people have a choice–whatever works for them. I’m so glad AANE exists and that it’s been a lot of fun. And personally, I hope to be more involved with parent groups and the fathers group!
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Read other June 2021 Newsletter Stories
Reflections from the Adult Community: Caitlin
Reflections from the Parent Community: Stella
Reflections from the Professional Community: Dr. Carol Singer