“Adulting on the Spectrum” with Autism Speaks

Our Facebook group, “Adulting on the Spectrum,” was created last summer to provide a space for autistic adults to cultivate friendships, find support and have fun. The moderators of the group, Andrew Komarow and Eilieen Lamb, are autistic adults themselves, and all group members either have an autism diagnosis or identify as autistic. The group has 420 members and growing by the day!

Andrew and Eileen took the time out of their busy schedules to answer a few questions about their work in the autism community, their own lives on the spectrum and the launch of a very special project with Autism Speaks!  Learn more about Andrew and Eileen and their work in the autism community in this Q&A:

Andrew Komarow: Founder of Planning Across the Spectrum specializes in helping any individual, family or employer of those with autism and other disabilities pursue financial independence. He is a proud autism advocate and passionate about his work as a Certified Financial Planner™ (CFP™) Certified, Charted Special Needs Consultant, (ChSNC®), Neurodiversity Professional (CNP®), and many more. He strives toward helping his clients gain financial security now and for their future. 

When were you diagnosed with autism?

At 28 years old after a lifetime of wondering why I felt so “different” from everyone else and years of misdiagnosis and treatment, I was told that I was on the autism spectrum.

What spurred you to seek a diagnosis?

I had been in therapy for anxiety-related issues for years and happened to tell her about the Netflix show “Atypical” and how I felt I related to the main character. My wife and I joked that had many of the same mannerisms, but it was especially funny because as a kid, I loved penguins, I really disliked a lot of the same sensory related things he did, I had a pet turtle, and one of my first jobs was working at a store similar to Best Buy (all from the show). My therapist said, “you shouldn’t be joking, you definitely do share some of these traits,” and the road to diagnosis started there.

How did having an official diagnosis impact your life?

It changed my entire life. I went from pushing myself for feeling different, to learning to use that difference as a strength. I thought everyone was bothered by the same things I was. There were simple things like getting my haircut and which route we took to the grocery store, to more complex things like changes in routine and overly bright settings. I never even thought I really had anxiety because I’ve never known a life without anxiety. Once I knew the reason why some things impacted me the way that they did, I was better able to cope and adapt. I was also able to share how this newfound information had impacted my life with those around me and watch them adapt as well. 

What made you become a voice/supporter/advocate of the autism community?

I really saw a need for autistic voices to be heard, and when I say autistic voices, I mean all autistic voices. I got involved with local efforts in my state. I joined non-profits, state advisory boards for autism, and transformed my business to support the neurodiverse community. I think it started as wanting to learn as much as I could about autism in adulthood, and from there I saw the needs of the community. As a Financial Planner I knew I had a calling to work not just with “special needs” and parents, but to really engage the adults in the community themselves. We really have been left out of the conversations for so long - it's time to change that.

Why did you decide to become a moderator on the “Adulting on the Spectrum” Facebook group?

It seemed like a good idea at the time. That is almost always my answer to why I do something. Of course, when I look back in hindsight some things are not so great ideas. I feel if we really want to advocate for real change, then that isn’t just about advocating, it is about taking meaningful steps in the name of progress, regardless of whether they are big or small. I felt that this little group was a way I could meaningfully contribute to bringing kindness to the entire autism community.

In your opinion, why is that group and others like it, so important to the autism community? 

 I think it is important to have a place where autistic adults can talk among themselves in a safe space. So much of the internet can be a toxic place that invites trolls and pushes people away in shame and self-hatred. There is a reason why the tagline is “come as you are.” We can’t sit and talk about issues in a bubble of those who share our own opinions, boycotting people and organizations and expect real changes. Real change happens by engaging with people who have different ideas and beliefs and learning how to make the world a better place. I saw this group as an opportunity to do just that, within the true autism community.

Can you introduce the new podcast you will be hosting with Eileen Lamb and give a quick tease on what we can expect to hear?

Expect to hear real discussions, from real autistic adults, many of whom are professionals out in the "real world". We are not doing this to be your inspiration porn and we are not here to say everyone is like us. We want to give a voice to all autistic voices regardless of what their beliefs are about specific therapies, organizations, etc. We want to hear from everyone. We want to be a bridge that brings the entire community towards the goals that we can agree on. We want to talk about things in a deeper, more impactful meaningful light.

Eileen Lamb: Author of "All Across The Spectrum" and founder of The Autism Cafe, is a writer and photographer. Born in France, she now lives in Austin, Texas with her husband and two sons, Charlie and Jude. On her blog, she shares the ups and downs of raising a severely autistic child while being on the autism spectrum herself. In her free time, Eileen enjoys daydreaming, and road trips.

When were you diagnosed with autism?

I was diagnosed with autism at the age of 26. After my son, Charlie, was diagnosed with autism, my mom said, “he can’t be autistic, you were the same way as a child.” I knew without a doubt that Charlie’s diagnosis was correct, so I started to wonder if maybe we were so similar, because I was autistic too. I went through something called a “therapeutic assessment,” and was officially diagnosed with autism at the end of it.

Did having an official diagnosis bring about answers you were looking for throughout your life?

Definitely. I’ve felt different for as long as I can remember. I thought the issues I kept struggling with were all my fault, and I was hard on myself for it. For instance, I felt stupid for not being able to go grocery shopping or get gas without freezing up or just not understanding the process that everyone else practically seemed born knowing. It was frustrating not being able to do these “simple” things. I’ve come to understand myself better and to be kinder to myself when I fumble some commonplace thing.

How has your diagnosis helped you be a better parent to your children, Charlie and Jude?

I don’t know if it helps me with Jude since he's not on the spectrum, but it helps me connect with Charlie. I understand many of his behaviors that other people don’t get. For instance, when he covers his ears and no one knows why, I’m usually able to pinpoint the exact noise that’s bothering him because I hear it too. I also let him stim because I know how bad it would make me feel if someone prevented me from doing it.

As a self-advocate and advocate for others on the spectrum, why is it so important that the autistic community be able to count on one another for support?

The autistic community is so divided right now. It’s unhealthy. I wish we’d find a way to respectfully disagree so we can achieve positive changes that will make a difference for all autistics.

Why did you decide to get involved with the “Adulting on the Spectrum” Facebook group?

I thought it was a nice idea to have a group for autistic adults where all autistics are welcome, regardless of their opinion on the various issues within the autistic community. It’s a safe place, free of judgment.

How has being a part of that group impacted your life?

Seeing us autistics have different opinions without attacking each other gives me hope that we can work towards a common goal that will benefit everyone in the autistic community.

Can you talk about the new podcast you are starting with Andrew and autism speaks and why you decided to get involved with this project? 

With this podcast, we want to give a voice to a variety of autistic perspectives. We want to share stories of people living with autism, what their life looks like. Just like neurotypical people, autistics are all different from one another, and I think it’s important to listen to as many voices as possible. For instance, we aim to have autistics on the podcast who communicate using different forms of communication like AAC and sign language. 

What do you hope the podcast will bring to the listeners in the autism community?

I hope it shows people how awesomeness and uniqueness are as common among autistic people as the neurotypical. Most importantly, I hope we can help unify the autism community so that we may all make an impact together in improving the lives of people with autism.