5 Ways to Advocate for Your Autistic Offspring
If I had a dollar for every time someone told me my son didn’t seem autistic (often, regrettably, meant as a compliment), I would at least have a nice little coffee fund. But if those folks could travel back in time, they would see that there was a time when we wondered if our son would ever be able to do many of the things we take for granted today, from writing his name to simply sitting through a school day without injuring himself from stimming.
As with many families of autistic children, the reality is that our family struggled for years because we didn’t always know the right way to parent our son. In pure desperation to help our son get through the school day, at one point our son’s IEP included a refrigerator box in the corner of his classroom that he could get up and hide out in. Elopement, meltdowns, inability to have food touching – there were many challenges we had to work through as a family and community to best serve our son’s needs. And while the shape of those challenges is different today than it once was, the need for learning and advocacy never ends.
Every person is different, whether they are neurotypical or autistic or ADHD or anything else. But if you are feeling ill-equipped, inadequate, or tired of failing, I wanted to share some things I have learned that can make life better for your child.
1. Listen to the voices of autistic folks first.
There is a saying among many marginilized communities: Nihil de nobis, sine nobis. It means “Nothing about us without us,” which happens to be the mantra of the Autism Self Advocacy Network (ASAN).
When our son was very young and we were going through the difficult process of obtaining an autism diagnosis and getting his IEP going, we were fortunate enough to have an experience that shaped our understanding of autism and taught us that to give our son what he would need as parents, we would have to become his advocates. And advocacy begins and ends with listening to the voices of those being advocated for.
In February 2012, we had the opportunity to hear Dr. Temple Grandin speak at Tulsa Community College, and it was a life-altering experience. Dr. Grandin is an autism advocate who developed a more humane method of slaughtering livestock due to her unique perspective as an autistic woman. Hearing her speak and watching the movie about her starring Claire Danes made us realize that our son wasn’t broken or faulty in any way, but that he was simply wired completely differently from neurologically typical folks.
We also realized that the people we needed to be learning about autism from were autistic people. That sounds like it should have been a given to me now, but back then when we were looking for information, it’s wild how we just didn’t realize that everything we were running into was written about autistic folks from the perspective of neurotypical folks – often folks who were not interested in listening to autistic voices, were not serving them well, saw them as a burden, and were more than happy to speak on their behalf. Worse, many of these folks were sizably profiting from it as full-time mommy bloggers, nutritionists, or writers selling books. Because it is my fatal flaw that I like to give folks the benefit of the doubt, I still suspect that many of them are unaware of the harm they are causing.
But harm is harm nonetheless – intent versus impact, amirite? And it makes sense that any time a marginalized community is talked about, they should be the ones leading that conversation – it’s a hard lesson, and one I have to admit I am still trying to learn as I work on becoming a better ally for all marginalized communities.
The great news is that there have never been so many ways to hear autistic voices and learn from them. Some autistic folks are more comfortable or more able to speak using text, so you can find a lot of people writing in chat rooms or on Facebook boards who use written language to overcome spoken language or social barriers. There are also plenty of autistic folks using apps like TikTok and YouTube to openly discuss their lived experience. I can’t emphasize enough how transformational listening to these voices can be for your parenting, your advocacy, your activism, and your empathy and support of autistic individuals. Seek. Them. Out.
2. Realize your child is wonderful.
Being a parent is going to have difficult moments under the best of circumstances, and being the parent of an exceptional child can leave you feeling like a failure in so many ways. But even a cursory peek into the grimy corners of autism parent groups on Facebook can yield a swirling vortex of self-pity and negativity that, let’s face it, is not really helping us get our kids what they need in life.
I’m not fit to judge anyone on this matter. I mean, who among us is not guilty of unloading about personal matters on the social medias? If there was a real Facebook jail, I’d be condemned for life – and let’s not even get into Myspace. But it is worthwhile to remember that you’re talking about a child – a child who will one day be 15, then 26, then 45 (you get the point).
And putting everything aside, all the challenges of trying to force that child into a neurotypical box, he/she/they is a beautiful, complex, incredible human being and you, as their parent, you know what the world has yet to see. And yeah, they’re going to have challenges in life, but your job is to advocate for them so that one day, the world will see the unique gifts they and they alone have.
You’re going to run into people who tell you that autistic folks are damaged, broken. That autism is a disease. But even if you were to entertain that line of thinking for a second, all it will do is lead you down a path where you see your child as flawed instead of raising her up, helping her find her voice in the world.
With genetic science where it is today, we really don’t yet know much about why some families have higher genetic prevalence of autism. But what we do know is that most autistic advocates support a neurodiversity perspective and emphasize that autistic individuals add to the richness of human variation. In this spirit, we have raised our kids to understand that neurological diversity is something to be celebrated. What a dull world it would be if we were all the same!
3. Be cautious about controversial therapies and online communities.
As with any community, folks in autism parent support groups love to share information they feel could be helpful or found interesting. And if you live in the world long enough as a parent of an autistic child, you’ll probably be the recipient of a fair amount of unsolicited information that could potentially “cure” your child.
This comes back again to listening to autistic voices. But suffice it to say, many of these groups are very maligning within the autistic community. Even if you vet this information and you don’t feel that something is problematic, it’s worthwhile to ask yourself if your kid might someday when he or she is an adult or look into what autistic voices have to say.
One of the more controversial groups/approaches is ABA (applied behavioral therapy), which is generally not supported by neurodiversity advocates (although even within the autism community, there is some degree of debate). Not knowing that, I looked into it after someone suggested it for my son and learned that autistic kids who go through ABA are 86% more likely to experience PTSD than their peers. Big yikes.
Another controversial approach to autism is the group Autism Speaks. Autism Speaks is a nonprofit organization that many autistic adults consider to be a hate group, full stop. Groups like ASAN say the general tone of the organization is rooted in a belief that autistic individuals are a burden and that autism should be ended – something many autism advocates argue is tantamount to eugenics (here is a counterpoint to that from an autistic adult who works for them). Whether or not you agree with this assessment, it’s important that if you are going to rock the puzzle piece symbol or interact with this group, you should be aware of how deeply controversial they are among autistic adults and advocates.
Diets that promise a cure also fall under this category (not diets that might help with an autistic child’s digestion – those are fine as long as they are safe!).
Again, not everyone who is autistic feels that way, and I am not here to make a judgment call for you. But I do believe the fact that there are some controversial treatments, groups, etc., is something worth consideration as you begin your journey as an advocate parent.
4. Reach out for help getting your child help.
The reality of parenting for any exceptional child is that helping that child make it in a neurotypical world can be overwhelming and almost feel like a full-time job. Back when my son was little, I didn’t really know anyone personally with an autistic child yet, and like many parents, we were learning on the job. Our kids are all close in age, which meant that we had three kids in diapers at one point and simple tasks like going to the store were often difficult. Before we understood the role that sensory stimuli can play for autistic individuals, we did not understand why our son would hit himself against things until his legs were so bruised we worried about teachers, family, and Child Protective Services thinking we were hurting him.
When we used to go shopping with our young kids, we would encounter a Bermuda Triangle situation where the three kids were eventually freaking out in unison. Upon entering a store, I would almost have to set a timer, and if I didn’t get my shopping done in a certain time frame, he would start kicking the cart, making repetitive motions and sounds, and doing things that I now recognize as a meltdown.
This would upset the then-baby sister, and she would begin to scream – nay, wail. In turn, our other son would start to act out. Believe me when I say there were times when I was quite literally dragging my screaming children from the store while people looked on judgmentally. My youngest would fully go “stiff as a board, light as lead,” forcing me to look like a child abductor as I wrangled her into the car seat.
It took us far too long to realize that shopping at big box stores was too much for our son at the time from a sensory perspective. We could get it done if we brought fidget toys or distractions and kept the whole trip to a minimum time-wise and stuck to less busy times or smaller stores, but if possible, it was better to work things out so we didn’t have to take all three kids with us.
And there was a time – a long time – when we didn’t know how he would get through school. Like many exceptional students, my son encountered educators who labeled a “behavioral problem” and was warehoused into classrooms that did not serve his needs. The system is not yet set up for exceptional kids’ success, although I believe it will be one day. Your child can succeed in school, but there is a good chance you will have to reshape what is offered within the school system through diligent advocacy, and it will be hard.
All of that is to say that I get how hard it is, especially when you’re out there all alone and you have literally no clue where you’re going wrong. Having a good support team behind you can make all the difference. Fortunately, there are organizations available to help you. When our son was younger, we used CREOKS, and today, we use Family & Children’s Services. Both organizations helped us to focus our strategy and find support on multiple fronts.
Just to give a fuller sense of what that entails, we work with an entire team through FCS that includes counseling services, academic support that visits our child in school, and a point person for helping our family with other needs – many of which we had no idea were available. For example, over the summer they helped us obtain much-needed respite vouchers, and they directed me to a program that may pay for a vision-related procedure I need.
If you’re not yet working with one of those organizations – or a similar organization where you live – I can’t recommend it enough. They are nonprofits, so it won’t cost you anything, and they’re committed to helping you and your family in every way they can. Working with FCS makes us feel like we aren’t alone, and they have helped us make plans and advocate in ways we never would have known were possible without their help.
5. Teach your child to become an advocate.
Self-advocacy can be especially challenging for individuals who are autistic, but it will serve your child well to learn to advocate for herself as he or she grows older. One way to make sure she is able to do this is to include her in decision making that affects her as much as possible. If there is a question about which school is best for her, ask her how she feels. Ask for their input when developing their IEP.
Our son communicates better with texting, as he is able to process his thoughts more clearly and the conversation is stripped away of nonverbal nuance, so he uses his phone to text us throughout the school day when he has questions or something he needs help with. He is able to advocate for himself by asking for help when he needs it or telling us what he is having trouble with during the school day.
It’s also important to teach your other kids to be advocates, not just for themselves but for other students and folks within their own classrooms and communities.
At the end of the day, just remember that you’re a family, and your love for each other will guide you through the journey together. Thanks for reading, and have an empowering week in your little nebula!