There are times when caregivers, family members or total strangers speak up before we have answered the question ourselves. While we are trying hard to process what is really being asked and how to word an answer to the question in whatever form of communication we decide to do so, someone has already answered for us.
By Christian Jonas MacNeal
As someone who was once an autistic kid and is now an autistic adult I wanted to share some things that you should always do and never do with a child on the spectrum. These are tips that are sometimes easy to overlook and there are others that you may not have thought of before.
Hopefully you will find, as Oprah says, an aha moment here that you can use to further connect and bond with your child. Or, it may enable you to see something you are doing in a different light that you can cut out of you and your child’s life.
The purpose of this article is to share some insight from someone who has lived to tell the tale about what made my autistic childhood amazing and things that I could have lived without.
Never lose your sense of humor about being an autism parent!
This is something your child understands and can also see the humor in. Laughter, after all, is the best medicine and it is what the most memorable memories are made of. This one is a do and do as often as possible!
Always prompt, never push!
I get it you want your child to reach his or her full potential but pushing instead of prompting leads to poor self-esteem. Always trying to live up to unrealistic expectations and not getting the much needed support he or she needs also contributes to that negative feeling. We on the spectrum need to be shown how to do things over and over with support and compassion. What we don’t need is to be pushed past what we are capable of and all the while we are unable to tell you verbally or otherwise that enough is enough! I am not saying to not help your child achieve all that they can, I am just saying there are much better ways to go about it and empower them to reach their full potential. Remember, prompt but don’t push!
Enter their world whenever possible
Doesn’t sound so simple, right? Well actually it is. To some degree or another, parents fear the unknown to the point of not approaching or knowing how to approach their ASD kid(s). The best way to do this is spend time with them doing one of their special interests for a few hours. Or make a whole Sunday Funday of nothing but what they love to do and do it with them and ask questions. You can also take, for instance, art and or a hobby they might enjoy and make that hobby your guy’s special time spent in their world painting along with them. By entering their world it shows them you care and the difference divide goes away for a while. This one is a do and do it often!
We aren’t coffee tables
Kids and adults on the autism spectrum are aware when they are being talked about as though they are a coffee table and I assure you it isn’t fun for the person on the spectrum. I have even heard parents say, “Oh they are used to it.” The truth is being talked about like you are not even there feels like you don’t matter; internally, it feels like you want to scream, “Why don’t you ask me what I think!” The frustration it causes builds up inside you. This is a big one you as a parent should not do or allow others to do this to your kid. This one is a big don’t!
Stim the way
There is much debate over allowing your kid(s) to stim and if it should be allowed at all. The only real reason this is even an issue is because of the desire to make ASD kids “normal” like their peers, but this attitude needs to stop as we are different not less. Just because we do things differently and act differently does not mean we are somehow broken and in need of being fixed. Stimming is something we do to feel safe and to calm down; it is our way to self-regulate and soothe. So long as it is not consuming the whole day, every day it should not only be allowed but it should be embraced. If your kids do not have stims they take out of the house I suggest that they do – and this is at any age. It’s a great way to have fewer times with kids running off and it helps with feeling safer and calmer in new places and with new people. I still have stims that I use and carry everywhere I go. It is healthy and promotes self-regulation. Who cares what people passing by think about it? This is a simple do. Let your kids stim!
You’re too old for that
In one word, no. No, we are not and, guess what; even as adults we are not too old. Our minds work very differently than those of NT’s and as we grow our desire for stim toys, movies geared for a very young audience and other toys doesn’t stop like an NT’s as they reach different marks in growth. In fact NT’s are not meant to have the same interest in these things from one year to the next. For us on the spectrum it is comfort, entertainment and it give us a chance to shut out the world around us for a little while and we treat these things more like friends or family instead of some old toy, movie or stim toy. For us these objects have a life and feelings and have been there for us no matter what. So the answer is we are never too old nor should we be told that. This one is a don’t!
If I do say so myself
All if us on the spectrum understand and even appreciate when those who love us speak up when we are unable to for ourselves. It means a lot to us and we think silently to ourselves, “Yay mom!” It is needed in a lot of circumstances and again we do appreciate it when it is needed. There are other times when caregivers, family members or total strangers speak up before we have answered the question ourselves. While we are trying hard to process what is really being asked and how to word an answer to the question in whatever form of communication we decide to do so, someone has already answered for us. Give us time to try to answer the question on our own in order to get our true answer before jumping in to answer for us.
This becomes very important for a few reasons. It build our self-esteem, it keeps us from getting in the pattern of not participating in two-way communication, and it shows that you are interested in and respect us enough to wait for our answer. Most of us are not very effective at communicating, so when the real world and strangers do this to us we shut down and it looks like we are regressing. Really we’re doing what anyone would do if day in and day out we spent hours trying to learn this skill and still are not heard by those we love. This one is a don’t for many different reasons.
It’s all part of the routine
Our routines are everything for us and without them we are lost and do not know what process needs to happen in order to get a task completed or in what order to complete it. It also gives us a control of what will happen to us in a world that offers us very little security and it reduces meltdowns and outbursts. It is important that routines don’t change too quickly and any new things need to be slowly integrated into the routine one at a time to make it effective not just for the person with ASD but for the whole family.
There are different ways to make a routine chart. My suggestion is to find a large Monday through Sunday daily chart and laminate it. Then find picture cards that also have the word at the bottom and print and laminate those. Then take strips of Velcro and run them down each day of the week in a large continuous strip. Cut out squares of Velcro and use the soft side (loops) to adhere to the back of the picture card while the scratchy Velcro (hooks) are on the actual chart. Do the same thing with the Velcro strips on the back of the weekly chart and adhere it to the wall level for your kid or adult on the spectrum. Your chart is complete. I suggest doing the same exact model with an emotional check-in chart on the wall along with a back pack sized one that can be filled in with a dry marker and can go everywhere. It works and it is a must for every autism household. This one is a do for anybody of any age on the spectrum.
Too much at once
Have you ever noticed your ASD child seems to be just not getting it and for every time they are not getting it you try harder to make them understand. Yeah, well you’re wasting your time as our brains don’t work that way. In fact our brains work in a way that word by word and sentence by sentence we are drifting closer to shutting down and we can’t help it; we are just wired that way. Instead, understand we can only take on one thing at a time or less than five minutes before you have lost us entirely. Also keep in mind, with the added information that we cannot process as we are still trying to process the initial information we are inching toward the dreaded meltdown. Instead keep it to one and only one topic at a time without referencing the past or future and keep it under five minutes. Use the clock timer and explain that we have five minutes and when the timer goes off we can go back to what we want to do. This will produce a much better outcome. Don’t overload us!
How many times do I have to say it?
It is important in any situation to explain in detail why you are talking about what you are talking about or why this is happening. Be reassuring that everything will be OK; be clear about what will be talked about and why; what the outcome will be; if there are any consequences and what they are and what and can be the expected overall outcome. This should be done before serious talks, punishment, a change from what is going to happen, family or friends coming to stay, holidays and anytime a bump in the road or a major change, even for the day, is going to take place. Do take the time to explain!
I hope that you are able to take away things that you can use in your daily life from this post. Never forget that to your kids you are the world and they would do anything that they could to take the stress caused by autism away for you. On the other hand minimize them feeling like they need to as it leads to a lot of self-doubt, hang ups and poor self-esteem. The bond between kids on the spectrum and their parents is a testament to true love.
Keep up all the great work, remember to take time for yourselves and appreciate every day you are able to be together as our largest and most valuable commodity is time, so make it well spent!
There is not a puzzle piece missing, we are instead unique puzzles all of our own creation and should be treated as such. We are whole people who deserve the kindness and respect that we show to others. The cure to the autism spectrum lies within visibility, open hearts and education, it is not something we will or can find in a lab.
Christian Jonas MacNeal is a writer, journalist, activist and public speaker who has autism. He currently is the Development Director at The Gadget Guys, a nonprofit dedicated to getting technology to those on the autism spectrum. Prior to that he has been a two time Editor-in-Chief and a Communications Director to name a few.
Photography by Christian Jonas MacNeal.