April is Autism Acceptance Month. The month reflects a commitment in supporting individuals on the autism spectrum. It highlights society’s dedication to improving the need for a more inclusive and accepting society. To honor the month, we provide a parent’s excerpted perspective to give some understanding as to what it is like to parent a child with autism.
The following is an excerpt from an interview with Mo Hamoudi and a Seattle area mom of two amazing kids, one of whom was recently diagnosed with autism. To respect her child’s privacy, names and identifying information have been removed throughout.
M: Hi. Thank you for talking to me today about your experience as a parent raising a child with autism. If you can, can you help me understand what autism is?
ASD Mom: To me, autism is a diagnosis that allows us a way of generally understanding how certain people’s brains work differently than a “neurotypical” brain—specifically, a reason someone might have challenges with certain social or behavioral quirks.
M: How did you come to understand what it means?
ASD Mom: I had preconceived notions of what it meant based on my exposure to people with autism in real life, movies and media. I have a much clearer understanding of it since my child was diagnosed but am still confused and learning.
M: How old was your child when they were diagnosed?
ASD Mom: 9.
M: Describe to me what it was like learning about the diagnosis.
ASD Mom: It was not completely unexpected because of some of their behaviors—going all the way back to when they were a toddler. But it was still hard for me and our family.
M: Why was it hard?
ASD Mom: We live in a fairly neurodiversity-affirming environment but there is still a lot of stigma associated with a child who is diagnosed as autistic and what that means for their day to day lives, their education, their behavior and their future.
M: Can you tell me a little bit about the stigma?
ASD Mom: I mean, I grew up in the 80s. I watched movies like Rain Man. I remember derisively referring to people as “on the spectrum” when they acted oddly in public or in social situations. I had this idea of what people with autism act like and it is not what my child acts like. At its core, autism is a diagnosis that is based on society’s grievances with my child and my own perception of my child’s “issues” and deficits. I am an extremely social person and, for me, embracing this diagnosis means that I am accepting that the parts of my child that can sometimes make me cringe and that I wanted to change may not change and that is ok, because they do not need the same things from their social environment that I do.
M: What are some of the negatives people associate with your child or social deficits?
ASD Mom: To be fair, my child with autism is fairly social as far as it goes—they have a bunch of incredibly close friends and easy relationships that are very give/take. But they struggle with becoming overwhelmed really quickly and regulating their emotions when challenged. They are hyperfocused on rules and fairness. Sometimes my child struggles with maintaining reciprocal conversations or developing relationships with others who do not have the same interests as them. For example, my kid would rather just not have one of their friends over at all than have to figure out what to do when that friend starts talking about soccer.
M: Your child sounds like Larry David.
ASD Mom: Hah. Our child is also incredibly and annoyingly bright. We are learning how to deal with all of this as better parents. Before the diagnosis, I went into conflict with my child, thinking that they were being willfully rigid or inflexible. Now I understand that my child’s distress at being given a different fork to eat their dinner with is not “dramatic” or even intentional. They just perceive this as an insurmountable roadblock to eating, whereas most of us would not even notice the difference and would just dig in.
M: Do you feel better knowing this? Or having more information?
ASD Mom: Yes. Having a diagnosis has guided us toward resources on how to be a better parent to our kid
M: Have you cried about this?
ASD Mom: Yes. So much.
M: Do you ever feel alone in your sadness?
ASD Mom: Sometimes I do but I have a wonderful support system surrounding me. It was really hard for me as their school life was becoming more difficult. My worry was other parent’s perceptions of my kid as a “bad kid” who they didn’t want their kids to hang out with. I did not want those perceptions to leak into my kid’s view of themselves. That felt like something I couldn’t just “fix”
M: Has the situation created more tension between you and your partner?
ASD Mom: It has. Everyone comes to a partnership and/or parenting with a different set of skills and baggage. We are facing a new challenge, we are both learning, and we are trying to approach this as a unit, but our kid needed help quickly and trying to catch up and keep up with everything else we have going on has been exhausting. It brings out the best and worst of us.
M: How has the situation created tension for your other child?
ASD Mom: So, we have two kids. Our other child is the “easy kid,” and over the last six months, a huge amount of our attention has been on managing the life and appointments for our child with autism. That lack of attention impacts our child without autism—they have vocalized this to us in a million ways, and we are trying to be better about acknowledging how hard it is for them, too, right now.
M: Describe how the diagnosis came about.
ASD Mom: We have always wondered about whether our child with autism was neurodiverse.
But it wasn’t until very recently that we got to a crisis point in their rigidity, ability to manage challenges and emotionally regulate. There was a stark change in our child’s behavior and self-confidence so we were really motivated and wanted to get answers and support as quickly as possible. The process of getting the eval has been a real eye-opener on our privilege. We have attended classes with families who were not able to get their child tested for years because of waitlists and provider shortages. We got an interest-free credit card to park all the “diagnosis costs” and initial support services, but that is not an option for most people. If we had tried to go through our health insurance we would have had to wait up to a year.
M: Talk to me about how the delay in getting a diagnosis impacts families.
ASD Mom: Kids age out of a lot of covered services around 6 years old, so if you can’t get a diagnosis for years, those services aren’t available anymore. And during those years that families are desperately waiting to get an assessment, they need help! They don’t qualify for services without a diagnosis, their health insurance won’t cover therapies or anything else, so they are in limbo and some are really struggling.
M: We are in Autism Awareness Month. What is something important that you want to share with anyone who is reading this?
ASD Mom: One of the things that has struck me the most is a quote: “If you have met one person with Autism, you have met one person with Autism.” Having the diagnosis has given us a place to find resources about autism and I am so grateful to have this guidance. On the other hand, my kid’s version of autism looks different than lots of other people’s. There are larger challenges that these kids or adults may have in common, but the way that shows up may be totally different for each person. My kid is incredibly smart and funny and sarcastic. A lot of the social struggles that they have are really masked by these more neurotypical parts of their personality and it makes it challenging for me to remember how hard they are working to keep up appearances.
M: Your kid sounds pretty special.
ASD Mom: My kid is really special. They are cute and funny and really making the most out of spring break.
M: How can someone like me who does not have an Autistic child help?
ASD Mom: Suspend what you think you know about autism and take steps to learn about it. I would prefer that someone ask me questions about it than make assumptions about me or my kid or what our experience has been like. There are a lot of families that are impacted by this diagnosis and their journey may look different. Some get a diagnosis during a crisis, some get it from a daycare provider before adoctor, some get it for themselves as adults. And there are still a lot of people who feel uncomfortable talking about it openly even here in Seattle. But, really figuring out how to support a person with autism may not be that different than supporting a person without autism. Be empathetic and ready to reframe what you know about certain behaviors or academic struggles or social challenges. I am still working on all of that, but I think it makes me a better parent and support for both my kids.
To learn more, please visit Autism Acceptance Month April 2024 | IACC (hhs.gov)