Dr. Sneha Kohli Mathur is an ally. She created a company, Spectrum Success, to provide adolescents and adults on the Autism Spectrum with numerous services to improve their quality of life. They offer consultation services for parents, adults, colleges, and parents. A founding member of the Equity, Diversity and Inclusion SIG in ABA, Dr. Mathur supports individuals with autism spectrum disorder and educates others to help create a socially inclusive and neurodiverse community. She has worked to raise awareness within the community and has enforced a future-focused approach in her work and support. Her passion and drive show how dedicated and impactful she is on the lives of individuals on the spectrum.
The Real Spectrum: How did you become interested and passionate about autism research and teaching?
Dr. Sneha Kohli Mathur: It was not a direct path. I have always been interested in psychology. In high school, I was very quiet and people kind of always assumed that I was a good listener. They would always tell me things like, “You should study psychology! You would be a great therapist.” I got my Masters Degree in General Psychology and when I took counselling classes, I realized that I wasn’t a good listener as much I was just a bad talker. I then changed my mind several times. I wanted to do forensic psychology. I wanted to do industrial-organizational psychology. At one point, I wanted to go into sports psychology. Then, in the middle of my Masters program, I volunteered at the Pyramid Autism Center in Orange, California. It was a school for children on the spectrum. I just fell in love with working with them. Regarding teaching, it wasn’t really a part of the plan. I wanted to become a behavioral analyst. So, when I became one, a lot of my clients’ parents would ask me what resources would their child have when they’re older or who will help them live when they aren’t around. I realized that there honestly aren’t many resources available for adults. That’s how I started my company, Spectrum Success, where I created a program for adolescents transitioning into adulthood. Though when I was going through this process, I noticed the lack of research. We think we are doing what we know will help the needs of individuals on the spectrum rather than taking the time to actually figure out specific solutions to their needs. So, I did a lot of research at Chapman University that focused on training employers to create a more inclusive and neurodiverse work environment with the knowledge I have obtained.
You helped to found the Equity, Diversity, and Inclusion SIG in ABA. What motivated you to do that and what are the goals of that program?
It is something that has been on my mind since I became a behavioral analyst. I’m noticing what we are working on versus the diverse cultural backgrounds in Southern California. I don’t feel like that representation is there. I go to conferences and it is predominantly older white men who are speaking to and teaching us. Everyone has implicit biases and if you are only being taught by one population, then everyone’s needs aren’t being met. I’ve always been cognizant of that. So, Cal ABA, an organization, provided the opportunity to create this SIG and with this SIG, we pushed the boundaries of what was acceptable. The first year we were running, we ran everything virtually. We put on free monthly events to share knowledge with anyone who needed or wanted to hear it. We focused on individuals with a diverse background. For example, I talked a lot about critical race theory and integrating that into ABA practices to be more culturally responsive. Others were talking about how to include ABA in sports.
I really admire how you said “only someone who is autistic can be considered a true expert on autism”. What can you say about treatment and therapies based on that statement?
A lot of my classroom discussions and research has focused on a collaborative approach. I am an expert in behavior based on my educational background. But only an autistic person is an expert in autism. A lot of my work right now centers on how we can include our clients in treatment planning. It seems so obvious, but it’s not done. We should be asking the client what is important to them. It doesn’t matter what our preconceived notions are about what is important. This is why it is really important to me to teach a “History of Disabilities” course because you will see that the important things that need to be included change over time based on what is important to society. We have to ask our clients what is challenging to them so we can understand from their perspective to help them that way. Another question that I often get is what if my child is nonverbal and they simply cannot tell you what their challenges or strengths are. There is a lot more research coming out about assent. This comes from the idea that we can observe their behaviors and see what they reject or accept.
Through your research, are you finding more individuals being diagnosed later in their adolescence?
I honestly think it’s a generational thing. I am finding that people in their 20s, 30s, 40s, and especially women, are actually being diagnosed now after being misdiagnosed when they were younger. Diagnostic criteria is geared towards white boys. African American boys are overly diagnosed with oppositional defiant disorder, instead of autism, their correct diagnosis. You’ll see girls being diagnosed with ADHD, instead of autism. Girls tend to be better at imitating social cues and camouflaging so they are often diagnosed later in life. I’m not sure that there is an increased prevalence of autism necessarily but I think that there may be an increase in diagnoses of autism.
Do you ever get frustrated by the lack of resources available for the autism community?
That was actually a huge reason why I got my doctorate degree. A lot of school districts and insurance companies stop funding for certain services at the end of high school or if the young adult with autism reaches 22 years old. It’s frustrating because we have all of these early intervention strategies for younger children with autism, but when you hit 22, you go off the “services cliff”; there is minimal to no support that is being federally funded. When I started Spectrum Success, I met with regional centers and they responded saying that your service description has the word “vocational support” in it and therefore, we cannot fund you because it’s for adults and another government branch rejected it because it would target too “high-functioning” individuals. So, now there is this sliver of the population that has such a lack of resources and may start to fall through the cracks. They have so much potential but may not have the social skills to navigate the job market or the social aspects of college. That has been a huge frustration for me. Of course, you can apply for grants, but you may get rejected or eventually, the grants will run out in two to three years.
What do you have to say for girls in STEM?
For anything you are interested in, STEM or not, follow your passions. Build on your strengths. Overall, find something you are interested in. If you are not interested, then you won’t find any sense of satisfaction in your work. If you focus on your strengths and interests, you’ll be successful in the long run and get that sense of fulfillment.