Advocating For Your Autistic Child
Today I want to talk specifically to parents of autistic kids. Whether you’re on the spectrum yourself or not, or if you’re considering that option in light of your child’s diagnosis, one thing that’s common to everyone is the need to advocate for your autistic kids. There are plenty of services available for autistic children, but you’ll have to seek them out. And some people have very set ideas about autism and autistic people; you may have to work hard to get them to see your child. I have no doubt that you’ll fight for your kid with everything you have – that’s what being a parent is about, after all – but make sure you’re advocating for your kids and not taking over too much. You want to help them live their best life, not shelter them from the whole world. Here are some tips to help you walk that line.
Listen To Your Kids
Autistic children communicate fear/anxiety/stress/anger in a lot of ways that can look like “misbehavior”. They may stim intensely in an effort to calm themselves, lash out aggressively when they don’t know how to deal with their feelings, meltdown from overwhelm, or shut down in fear or shame. Sometimes, these signs may be all you get to tell you that something is wrong, so pay attention to these behaviors and don’t shut them down if nobody is in danger of being hurt. By catching these signs, you can often get to your child and find the problem before things get worse.
We don’t always process our own emotions well, so even verbal kids may only manage “I hate them”, “they hate me”, or other exaggerated blanket statements. If this happens, definitely try to get them talking about it, but be specific and assume they’re telling the truth. Don’t brush them off with “of course they don’t hate you” or “you don’t really mean that”. This comes off as gaslighting to us, and your child may sublimate their feelings (which they don’t understand well in the first place) because you said they didn’t feel that.
Yes, it’s complicated, but the solution is easy. When your kid says one of these seemingly exaggerated statements, ask them “What happens that makes you say that?” (Helpful hint from an autistic adult: if you ask “Why do you say that?” you’ll probably hear “Because it’s true!” or “Because they do!” Always ask for concrete examples.) Once you’ve figured out the problem, you can ask “What could happen that would make you feel better (safe/happy/etc.) instead?” This makes your kid think through a new scenario and come up with concrete ideas of how they can make things better for themselves. It’s invaluable practice for adulthood.
When Your Child Can’t Communicate Easily
Communication is a key challenge for autistic kids. You’ll need to take up a lot of slack if your child is:
- Intermittently verbal
- Too young to communicate for themselves (under about 3-4 years old)
- Using assisted communication that others may not understand
- Or anything else I forgot that prevents them from communicating in a way NT adults might consider “meaningful”
Behavior is communication, and as a parent, you know your child’s behavior better than anyone. You can tell when they’re scared, or tired, or overwhelmed, or happy, and you can help your child by explaining those signs to teachers and therapists. If your child uses an assisted communication device, the absolute best thing you can do is educate everyone around that kid about how it works and how they should interact with them. You should make sure that those who are around your child every day know all the ways your kid communicates, even if that’s signing or texting in place of speaking when they’re overstimulated. This ensures that your child can communicate as much as possible themselves and sets them up for more independence later on.
With Teachers or Other Authority Figures
It’s a sad but inescapable fact that some teachers just don’t like the “weird kids” and will treat them unfairly. We’ve all heard and seen the horror stories at the extreme end of that. But I’m also talking about the kids who are smarter than their teachers but don’t have the social sense not to correct them at every turn. (Yes, that was me.) And sometimes, just the odd kids who stick out. The nail that sticks up gets beaten down, as the saying goes.
Your autistic child will need you to advocate for them in dealings with school probably more than any other situation. They will likely be afraid of any problematic teacher or authority figure and unable to stand up for themselves. In these cases, it’s up to you to teach your autistic child how to handle this kind of confrontation. Ask them all the specific questions you can, then go to the teacher or administrator for their side. Of course, you’re assuming that your child is telling the truth, but remember that autistic people often misunderstand NT interactions. So get both sides, just to be sure.
If it turns out to be a misunderstanding, you can give your kid a great lesson by explaining everything to them in terms they can understand. This shows your child how to catch themselves when they may be jumping to conclusions and ask whether people really meant what they thought. I’m in my late 30s and only learned to do this in the last few years!
However, if there really is a problem with a teacher, administrator, or therapist, you’ll need to show your child that you’re on their side no matter what. Any authority figure who is abusive or denies your child the right and means to express themselves must be dealt with. Don’t hesitate to go all the way up through the channels, whether that’s to the school board or an accrediting organization. If you can’t improve the situation, get your child out of there. This teaches an autistic child that they don’t have to just take whatever treatment people give them, that they have the right to leave a situation that is painful for them. Another lesson I’m still working on, myself.
The bottom line is this: be that Mama/Papa Bear! Just remember your goal is to set your child up for success, not lock them away like some fairy tale princess. Advocate strongly for your kids to show them that they’re worth fighting for, that they deserve to be treated well even if that means demanding it. Those lessons are priceless and will serve them well all their lives.
If you’re autistic, what do you wish your parents had done to advocate for you? If you’re a parent of an autistic child, what’s your best advice or your biggest struggle? Any teachers in the audience, please give us your insights, too!