Adria Nassim is back!
If you don’t know Adria Nassim, you should! This is the second blog post that Adria has helped me with this year—as a young woman with multiple disabilities, Adria is an inspiration both for how she has learned to manage and overcome her difficulties, as well as becoming an advocate and volunteer in the community. I met Adria long ago, and since then, she has taken a position as a bi-weekly columnist with the Bloomington Herald-Times, and she works as a research assistant at the Indiana Institute on Disability and Community at Indiana University. She writes a monthly blog, Adria’s Notebook, about her personal experiences with multiple disabilities as a young adult and talks about independent living and community involvement in teens and young adults with disabilities. She also gives guest lectures on autism and learning disabilities in children, teens, and young adults for the university and other academic institutions, serves on the board of directors for the Monroe County Autism Foundation, and is currently serving as a Volunteer Advocacy Ambassador with Autism Speaks to help advocate for autism-related policy and law on the federal level. If you are around Bloomington, you may see Adria around town with her service dog, Lucy. If you missed her first guest blog, you can check it out here.
For this post, I wanted to ask Adria a little bit about how she found acceptance, and along with some of her thoughts for those whose lives are touched by autism. Here are some of my questions and her responses.
Do you remember when you first noticed that you saw things differently than other children your age?
Roughly middle school to early high school years I began to notice that while I was doing just as well or in some areas, better than my peers academically, socially, the world was becoming more confusing and complex. I did experience some bullying during my teen years, and I had difficulty understanding social use of language such as sarcasm as well as reading gestures, emotions, and body language. I also had a lot of difficulty understanding social behaviors such as dating and relationships. In terms of independence too, I began to see that mine and my friends’ worlds were becoming different. They were going to driver’s education in the summer or taking a summer job, and I was going to tutoring and summer camp and coming home to an after-school sitter who would drive me to swim practice.
Do you have any great book recommendations that have been helpful for you in understanding Autism Spectrum Disorder or learning to embrace your uniqueness?
To be honest, although I have read several books on autism and developmental disability through the years, what truly made a difference was not the books themselves. It was consistent support from child and adolescent mental health services. Having someone to talk to who understood the field of developmental disability, but also developed a relationship with me as an individual and helped me work through the good stuff, while also acknowledging that life is sometimes super hard, super unfair, and super messy really made a big difference. Mental health issues are quite common in teens and young adults with autism, but with consistent therapy, I have learned effective coping skills and am now doing really well and am really happy.
When is the right time for children to learn about an Autism diagnosis? How can parents/doctors best share this information with a child?
I always say, it is better for a child to learn about his or her differences young than it is for a parent to withhold it until he is older, BUT if they do, later is better than not at all. Younger, in my opinion is better because it allows the child to become familiar and comfortable with his differences from a young age, that way, as he gets older, and potentially spends more time away from mom and dad, he will already know that he has a diagnosis and should, with time, be able to explain to others how it affects him in daily life. My parents told me very young, maybe 3 or 4 that I had cerebral palsy and a learning disability and I would need help to do some things. They also told me that it was okay to ask for help, so from a young age, I got used to going up to adults and asking them to tie my shoe or zip my jacket because I couldn’t do those things myself. People were very understanding and helpful and for the most part, it’s still that way today. I would say just sit down with your child, patient, or client and be open and honest with them. Allow them to ask questions. If they want to cry, let them cry. If they want to hold onto a fidget toy or a teddy bear while you talk to them or sit in a beanbag chair instead of on the couch, that works, too. For young children it may be helpful to read a book about their diagnosis after you talk about it. Both older and younger children may benefit from clinical psychotherapy from a licensed mental health professional for the purpose of processing emotions, emotional regulation and developing coping strategies as well as regulating potential mental health challenges like anxiety and depression.
What should parents know about helping a child with autism?
First off, please understand that the autism spectrum is very broad, so your child may not have the same goals or be at the same level of independence as the child with autism who lives a few blocks away, and that is perfectly fine. The human race itself is a very, very, diverse species. =) However, I would encourage you to challenge your child. Set concrete expectations, boundaries, and consequences. Give your child responsibilities every day that allow him to work on self care and potentially, independent living skills such as choosing his outfit for the day (*if not fully capable of doing so independently, potentially allow him to choose from a group of shirts, shorts, etc.) setting the table for dinner, or feeding the dog. Even children and young adults who have limited to no verbal communication, can still be taught to contribute, to maintain a sense of responsibility and expectation, and be part of a team. What’s important is that they find a method of communication that works for them such as American Sign Language (ASL) or use of an assistive communication device such as an iPad with a communication app. Also, I will say that having your child try things they have never done or that you know are difficult for them for 10 to 15 minutes, prior to helping them will not hurt them. They may cry and pout and not like it, and yes, if you’re running short on time, putting their socks on for them may actually be the way to go. However, in the long run, if you’re aiming for greater self-reliance, doing for them, although meant well, actually doesn’t help much. Let them try first.
What should providers know about working with individuals with autism?
Get to know your individual client. The autism spectrum is very broad and what works for one client may not go over well with another. Get to know your client as an individual: His likes, dislikes, what areas he does well in as well as what areas are more challenging, his interests, what calms or upsets him, his primary means of communication, etc.
There has been an increase in adults seeking to be evaluated for autism—what benefits do you see in having an autism diagnosis in terms of understanding yourself? How would this be helpful for adults who have been wondering how they fit in for years?
Having a clinical diagnosis of autism has allowed me to understand why I had difficulty fitting in as a kid and why I was very bright, as many with autism are, but did not understand the social world or how to make friends. I no longer feel as if I need to try harder or as if I am not trying hard enough or as if there is something oddly strange about me. Now I know it has nothing to do with me and everything to do with a medical diagnosis called autism spectrum disorder.
There has been a growing divide between the Autism community and autism providers, especially with regards to ABA therapy and person-first or identify-based language. What are your thoughts on this?
ABA, or Applied Behavior Analysis is a common method of therapeutic intervention for children and adults with autism and other developmental disabilities. It is one of the only methods which has been clinically proven and backed by scientific data to assist children and adults with ASD and other disabilities in making gains in areas such as social, community engagement, and independence and self-care skills. There are some in the autism community, including individuals with autism, some parents, and professionals who do not like or support ABA. Some believe that it teaches the client only to perform specific behaviors in a specific setting, such as an office or only if a reward is provided. There are also some who believe that the goal of ABA is to “make a child or adult with autism or developmental disabilities a normal child or adult, or to fix them.” First off, let me say that while there are years of science behind the practice of ABA, there is no science behind this statement. This is purely opinion circulated by various individuals in the autism community.
ABA, if done through a licensed professional, is a humane and valid form of intervention. The goal, potentially, of an ABA provider and client or parent, may be to work on the client’s social skills such as increasing eye contact, work on having a 2-way conversation instead of just giving “Yes” and “No” so that the client is able to form more effective peer relationships. They may also address areas such as decreasing stereotypical movements like rocking or hand flapping when overstimulated in exchange for squeezing a stress ball or taking a short walk outside due to the client being older and potentially having a desire to fit in with peers. I do support ABA, provided that the individual is licensed to do it. I think it can potentially, if done well, open several doors for clients. I get ABA every week and I don’t feel like it has ever once forced me to be something I’m not. My therapist is very knowledgeable and definitely knows that I have autism, but he helps me with executive functioning and social skills so that I’m able to keep a busy calendar and not get overwhelmed, which I like, and able to build relationships with people. I feel like ABA doesn’t hurt me. It helps, because I learn how to manage life and interact with other people and I’m able to make friends and have my own life.
I prefer the term “I have autism” as opposed to “autistic.” Autism is part of me, but it’s not all of me. There’s a lot more to me than a medical diagnosis, but all the same, if you were to refer to me as “autistic,” I wouldn’t get super offended or yell at you or anything like that because (1) I’m not that type of person and (2) the term “autistic” is still a medically recognized and clinically accepted term, so, you would not be wrong to say it even though I don’t really like it. Every individual and every family has their own personal preference. Always ask to be sure.
Adria, thank you so much for sharing your thoughts and ideas—I feel very fortunate to know you!
Adria lives in Bloomington, Indiana. If you are interested in reaching out to her, you can check out her column (you must have a subscription to the Herald-Times), her blog, or send her an email at: anassim@iu.edu.To subscribe to her blog, visit: blogs.iu.edu/adriasnotebook and fill out the simple subscription form.
If you are looking for a psychologist who will take the time to understand where you are and help you find answers, Dr. Jessica Myszak works with children and adults in many states—learn more about getting a psychological evaluation here.