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As a parent of two children with disabilities, I naturally relate to other parents who live similar lives. While some people will never understand what our everyday lives are like, I known other parents of kids with disabilities get it. This understanding has been a most wonderful gift.
A few years ago, however, I began to recognize the one thing I was missing as I raised my kids was connecting to adults in their community. As I wondered about how to best help my child, I found out the advice from adults who shared the same disability as my kid seemed to be not only helpful but eye-opening.
One of the best things I have done for my children since then is connect to people in their community. I have come to see other parents as my allies and friends, and the adults with disabilities as the experts — the ones I get to learn from so I can become a better parent.
This is why we reached out to autistic adults and asked them, “What advice would you give to parents of kids on the autism spectrum?”
These were their responses:
“We don’t fall under a stereotype. People on the autism spectrum may be able to drive, maintain a relationship, show empathy, find employment, make friends, have a social life. Milestones may be reached slower when you’re on the spectrum, but in no way does that mean we can’t reach them. It’s about progress, not perfection. As a teenager I had no friends and didn’t leave the house. Now I’m employed and have a lot of friends. Being different does not mean defective. Please do not give up. We need your unconditional love. It may be hard at times, but it will be worth it.” — Bryan C.
“I’m 32 with autism and bipolar type 2. Just because you have a kid with a disability doesn’t mean you get to use the term ‘Super Mom.’ I would like parents to stop hovering over and freaking out about there kid(s) with disabilities. Let kids be kids.” — Matthew V.
“Talk to your kids about the diagnosis, both the positive and negative. Help them figure out how they can live the best possible life with autism. Don’t keep the diagnosis as a secret, because you think your child will feel he/she is different if they know — chances are he/she already feels different. Tell them that they are different, but that it’s über cool to be different. But also tell them there are others autistic kids, so they are not completely alone.” — Ellen K.
“Be patient, we do things in our own time. It might take reminding us several times to pick up our toys or clean our rooms, but it will eventually get done. There’s so much going on in our minds. Anxiety overwhelms us. We can forget even the simplest of tasks. Just give us a regular routine and things will be done without even asking.” — Jay P.
“Let [your child] embrace their neurological difference and accept them for who they are. Secondly, be there for them whenever they are in distress, and don’t harm them — this is really important BTW. Finally be loving, supportive and positive towards your autistic child.” — Karen M.
“Believe and accept that their sensory experience is real when they tell you (through words, actions or otherwise) that their clothes hurt or that a noise is too loud… it is. It may not make sense [to you] and you may not understand, but just accept and help them in any way you can.” — Katy K.
“Whether as a parent you are or are not autistic, I can’t stress this enough: Don’t knock the stim. Please let them get it out, they are trying to regulate nerves firing and thoughts and emotions. If you try to stop them it’s just gonna make it worse. Yes, yes he does have to run back and forth. Yes, he has to have his hands by his face/mouth or his shirt in his mouth ripping it to shreds because he’s nervous. Let them stim. Let them stim!” — Tonya R.
“Remember always that it is a developmental delay… the child you love now, their skills, interests, abilities, difficulties aren’t going to be the same in five years, or 10 or 15… as you do for your non autistic children, have hopes and expectations that they will grow and learn new skills and achieve… believe in them always. The journey may be different with a few additional challenges, but it’s a journey none the less, and where you are now with your child isn’t your destination. Have hope, believe they will learn, support them to gain the skills they need to achieve their goals, and your goals for them.” — Katy K.
“Don’t use the diagnosis as an excuse for everything. Get out of your comfort zone and meet other parents of kids [with disabilities]. Read a blog or two by someone who is autistic. Never stop learning, and share what you’ve learned. Listen to your child with an open mind. And don’t forget to be a parent. Kids need boundaries and need rules and to be told no. Reach out to someone when you are feeling alone.” — Sara L.
“It’s an open topic in our home. Both my husband and I are on the spectrum as well as our kids. We embrace silliness but keep the routines on point. It helps that we’re able to relate to them on all levels.” — Aimee M.
“Do everything you can to keep the lines of communication open. Then when your child is experiencing difficulties they will feel they can trust you to explain what’s worrying or affecting them and you can help them to navigate. Don’t assume that ‘normal’ parenting methods will work, and try to focus on cause rather than behavior. For example, if you have problems getting your kid dressed in the morning, it could be that they are sensitive to the material the clothes are made of or the seams or labels. Try and find out and choose your battles. If your kid has food issues, don’t push them too hard to eat or they may end up with worse problems. If all they’ll eat is chicken nuggets, then let that be what they have. At least they’re eating.” — Tina J.
“Help them to find their tribe… other autistic children and adults… a sense of belonging is vital for self-esteem.” — Katy K.
“Don’t treat them any differently than ‘typical’ kids. They can do the same things and act the same ways.” — Megan D.
“Don’t film your kid’s meltdown without permission and post it to the internet. It’s abusive to humiliate them during a vulnerable time!” — Krist F.
“Use the skills you learned to adapt to teach them. Use your own story to understand theirs.” — Rachel D.
“Love your child. Give support at all times and do the best you can.” — Cristopher D.
Are you an autistic adult? What advice do you have for parents raising kids on the autism spectrum? Let us know in the comments.