The Dos and Don'ts of Supporting Autism Parents

Living with an Autistic child is HARD.  That’s the truth and there’s no way to really sugarcoat it.  It’s just hard.  Period. It’s one of the most difficult things I have had to deal with in my life.   Lots of well-intentioned people try to offer help and support, but the truth is, you cannot begin to imagine what Autistic parents go through unless you actually live it every single day of your life.  I would like to share with you what is, in my opinion, the Dos and Don’ts of supporting Autism Parents.  (note- this post was written after interviewing several Autism parents).

• ·      DON’T be offended by declined invitations but DO Keep inviting-   Autistic children are very routine oriented and have sensory processing issues.  An activity that might be fun for a neurotypical child may not be very fun for an Autistic child.  Certain activities can cause sensory overload, which can lead to hyperactivity and meltdowns.  What does sensory overload mean exactly? Imagine that you were trying to talk to someone while someone else was screaming in your ear and another person was flashing his hand in front of your face.  You would get pretty upset and annoyed.  That’s what it is like for a person with Autism in certain situations.   In addition, because most children with Autism are so dependent on routine and familiarity, any changes can cause overstimulation and meltdowns.  My son does not do well with any sort of routine changes, and taking him out in public is very difficult.   We cannot do things at very certain times of the day, and we cannot go certain places due to overstimulation.  In addition, sometimes we have to cancel plans at the last minute because my son might not be having a good day.  I know that it might be hard to understand but a declined invitation has nothing to do with you, or how we feel about you.  It has everything to do with our child and how much he or she can handle.  DO keep inviting us to things though, because there may be a time when we can go.  Autism parents need social interactions even more than others and we still like to feel included so please don’t count us out, even if we do have to decline. 
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• ·      Don’t be offended by gift lists – Every year for my son’s birthday and for Christmas I send out a list of “appropriate” gifts (we have two children, N is our younger son, but I don’t send out a list for him because he’s not Autistic).  This list is comprised of things that my son said he would like to have, or things that my husband and I feel would be appropriate for him.  It never fails, every time I send out one of these lists, I get a comment from a certain family member about how we should be grateful people care enough about our kids to get them gifts and every year I have to explain our reasoning to this family member.  These lists are not to be greedy or demanding.  Many children with Autism have trouble with flexibility and again, overstimulation.  An Autistic child may want something and have a hard time accepting if he doesn’t receive that gift, and may also have a hard time understanding WHY he did not receive that gift.  Also, and more importantly, certain gifts cause strange reactions in my son.  He feels things very deeply and in ways many of us cannot understand.  We do not like people to buy books for him, for example, because certain books may cause him to become very anxious and upset.  My husband and I, as our son's parents, know what is going to cause a reaction and what isn’t.  If you receive a gift list, PLEASE stick to the list, and if you have an idea for a different gift ALWAYS ask the parents first.  Autism parents HATE having to take gifts away because they cause adverse reactions in our children, and it never fails, every year we have a relative who gets something that is not on the list, doesn’t check with us first, and it is something that we have to take away because it causes a meltdown. 
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• ·      Don’t give my kid candy without asking me first - Some Autism parents are very strict about diet, others are not so strict.  It is VERY important to ALWAYS ask the parents before you give the child anything to eat, especially things like candy.  In my house, we are very clean eaters.  We don’t eat a lot of processed foods and I read labels religiously.  I have found that a lot of processed sugar and chemicals in our foods, namely Red 40 and High Fructose Corn Syrup, cause my son’s behavior and meltdowns to become extreme.   I won’t even let my son have a Popsicle at his end of the year school party because of the HFCS and Red 40 in most popsicles.   I cannot tell you how many times I have had someone say to me, “let him have it! What’s the harm?”  to which I reply, “you want to give it to him? Then you can take him home afterwards.”  That doesn’t mean that I NEVER let my child have treats, because I do.  When I give him a treat, I either make it myself, or make sure the ingredients are natural.  My point is, ALWAYS ask the parents, and more importantly ask when the child IS NOT IN EARSHOT!  Another thing about Autistic children is that when they see something they want, they will not let it go and THAT can cause a worse meltdown than the candy itself!
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• ·      Don’t make suggestions to me about how to deal with my child’s behavior or give me unsolicited advice (“have you tried…”) - Many well-intentioned people feel the need to give me unsolicited advice on how to deal with my child’s behavior, or they say “oh every kid does that.”  Ok so every kid may do “that” but here’s the difference- there is a vastly different reason WHY my kid is doing something compared to your normally developing child.  My child is having a tantrum because he is over-stimulated, he had a change that was not expected, or he is having a sensory overload.  Reward and punishment discipline is not going to work with my child because the WHY behind what he is doing is vastly different than the WHY behind why your child might be acting out.  My son isn’t acting out because he is being bad; he is acting out because something in his environment is “attacking” him. The biggest piece of unsolicited advice I get is to use sticker charts.  That is a reward system.  Yes I have tried it, and NO of course it didn’t work.  WHY? Because my son isn’t motivated by ANYTHING, not even the things he loves. My son, and many other Autistic children, are instant gratification type kids. They cannot think beyond what they want in that moment, or how they are feeling in that moment.    In addition, one of my biggest pet peeves is when special education teachers offer me advice.  I am a certified teacher, so I know about kids, however, we as parents know our kids the best.  Special education teachers may have experience with Autistic children, and they may know strategies to help them succeed in school, however they don’t know what it is like to live with an Autistic children EVERY SINGLE DAY.  They do not know unless they have one of their own.  My son is a perfect angel at school and his teacher gets to send him home at the end of the day.  So, please, if you are a special education teacher, or you are a person who doesn’t have an Autistic child living in your home or your family, please keep your suggestions and advice to yourself.  DO, however, research Autism.  DO ask questions of the parents. DO ask if you can share some information that you have found interesting (and don’t be offended if the parent declines).  I am perfectly happy to answer any questions people may have about Autism, so please!  Ask away! 
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• ·      If you want to help a struggling parent, don’t try to intervene with the child, always ask the parent how you can help- my son melts down in public, A LOT.  He also gets very over-stimulated and tends to bolt and hide, or wander.  More often than not, well-intentioned people will try to help me by intervening with my son.  They will try to talk to him in order to distract him and redirect.  That might work with a normally developing child, however it will not work with an Autistic child.  The reason why is because when an Autistic child is melting down or on sensory overload, his frontal lobe shuts down and he literally cannot hear anything you say.  Think of it as if you are at a loud rock concert and someone is trying to talk to you from ten rows away- you wouldn’t be able to hear that person.  That is what it is like for a person with Autism.  In addition to not being able to hear you, the child will not be able to focus on anything other than what he or she wants at the time, which may very well be getting away from what is causing the discomfort.  Even if you are a special education teacher and you THINK you know what you are doing, don’t EVER intervene with the child.  DO, however, offer some practical help to the parent that is relevant to the situation.  Don’t ask what you can do to help because the parent, in that moment, has one focus and that is keeping his or her child safe.  Offer to do something concrete (loading groceries into the car, for example) to help. 
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• ·      Don’t say things like- “Oh but he looks normal” or “Oh, but he’s so smart!” or “but he’s talking!” – People say these things to try to put an Autism parent’s mind at ease about his or her child’s current behavior.  People also say this meaning to let us know that our child’s behavior is not bothering him or her.  It’s something that people say with good intentions but it is actually a huge insult to an Autism parent.  The reason that saying these types of things are an insult is because our children look like everyone else.  When I have someone tell me that my son doesn’t “look” Autistic or that he “looks” normal, I often reply, “Well, how is he supposed to look in your opinion?”  Making a comment about a child being “smart” or a child’s ability to speak is insulting because it suggests that people with Autism can never speak, and that they are not smart.  Autism is a spectrum disorder.   That means that people with Autism can have low IQs with intellectual disability all the way up to very high IQs with no intellectual disability.  My son’s IQ was tested recently and came out in the high 150s, so he is highly intelligent.  Many people with Autism happen to be highly intelligent, even if they are non- verbal.  In fact, many of the most intelligent and creative people in this world are Autistic! Many of them are engineers, scientists, inventors, and even actors!   Have you heard of Dan Aykroyd?  Yep, he’s Autistic!  Daryl Hannah?  So is she!

• ·      Last but not least- when I am having a hard day don’t tell me what a blessing my child is- This is one of the major pet peeves of lots of Autism parents.  We know our children are blessings.  We love them unconditionally just like everyone else.  I cannot tell you how many times I have just needed to vent, needed someone to listen to me, and had a person tell me that my child can’t help it and he’s such a blessing.  The reason this bothers so many Autism parents, including myself, is because it is dismissive of our feelings.  It is basically saying that we do not have the right to feel the way we feel in that moment.  It says, “just suck it up and move on.”  When I am having a hard day with my son, and it’s REALLY bad, I just want someone to listen to me.  I need to be able to cry, to feel, to grieve, to be angry, to feel whatever I need to feel in that moment so I CAN move on.  Life with an Autistic child is VERY stressful and I cannot even begin to tell you how much.  When I am having a hard day, I don’t want to hear what a blessing my child is, I want someone to just let me vent.  It is so easy to feel alone and completely isolated when you are an Autism parent, like nobody understands.  Statements like “take a deep breath and know your child is a gift from God,” only serve to make me feel more alone.  I know my child is a gift from God, I know he is special and a blessing, but in the moment that I am completely overwhelmed with how much Autism sucks, I don’t want to hear dismissive comments about how my child is a blessing.  I want support, I want someone to listen, and I want someone to be able to listen to me cry.  You don’t have to say anything, just let me vent.  I just need a friend in those moments, a sympathetic ear. 

So there you have it, if you are an Autism parent, and you have something to add, please comment!  I would love to hear some of the other ways in which people can support us!  Please pass this along.  The more awareness we can raise, the more our families and our kids will be understood.  And please, don’t hesitate to ask me questions, I am happy to answer them!