7 Things It's Better NOT To Say To An Autism Parent

Most parents have experienced a comment that made them cringe or cry. I’m pretty sure ALL autism parents have. I try to tell my kids to think before they speak and ask themselves the following: Is it helpful? Is it necessary? Is it kind? I think that’s a good rule of thumb for everyone.

Years ago, I had a colicky baby and a 2 year old who was losing skills and descending into autism and I was losing my mind. A coworker told me, after having an argument with her teenage daughter, that I was “lucky my kids didn’t talk.” Another time, when I was worried about money because autism is so very expensive, someone said, “Well, it was your choice to have more kids.” Ouch! Sometimes things are said to us that are judgmental, passive-aggressive, or hurtful. And other times, people are just completely clueless and oblivious.

But, most of the time, people are trying to be nice and comforting. They just don’t know what to say and it ends up being an epic fail. I’m sure there are tons of online posts about what not to say to autism parents. Well, here is another one. This post is for the well-meaning people; and even though what I write might sound harsh, it is meant to be helpful. Because if you really meant well, you wouldn’t want to unintentionally hurt someone in a difficult situation. I can’t always articulate exactly why some of these things hurt – so if read this and still don’t get it you’ll just have to trust me.

Don’t say that you understand

Because you don’t. You just don’t. This is even worse if you follow it up with an anecdote about your child and it’s something very normal. Something like, “We were devastated when Suzy didn’t make the soccer team.” Yeah, that sucks. But it is not the same as being devastated because your child has never in his life had a friend. Or because you’ve never heard your child utter a single word. Or because your child is still in diapers at age 12. Please don’t minimize the suffering of an autism parent by pretending you are in the same boat.

Skip the platitudes

I do believe that we all have a purpose and that there are opportunities to learn through our struggles. But autism parents do not want to hear that “God only gives you what you can handle” or that “everything happens for a reason.” I credit prayer, luck, and the help of others for getting me through the tough times far more than I credit my own strength. Autism families are truly struggling and we frequently hear about abuse, murder, murder-suicides and other tragedies in our community. Some people really do have more than they can handle. And to be honest, it’s more than anyone should have to handle. And, what reason can you offer me to justify the suffering of my child? Hearing this just makes me want to punch you in the face and then explain that it happened for a reason…

Don’t talk about Holland

If you don’t know what I’m talking about there is this essay Welcome to Holland about how having a child with autism is akin to being told you are in Holland when you expected to live in Italy. It’s not what you expected and it takes some getting used to, but it’s still just swell in its own way. But the Holland essay doesn’t convey the autism experience of a lot of parents. There is no mention of kids lining up wooden clogs or walking into windmills or moms having to work in the Red Light District to pay the medical bills. A lot of parents relate more to this Welcome to Beirut piece instead.

Every autism parent’s experience is different – it might feel like Holland, Beiruit, Neverland, or Mars. But understand that you don’t get to tell a parent how great Holland is while you are living in Italy. Period.

Refrain from treatment advice

This is a tricky one. If you’ve read about some new cutting edge treatment, by all means, tell me about it. But what autism parents usually hear is something like, “I heard about a boy who stopped eating gluten and got better – why don’t you try that?” or, “Have you done ABA?”

The autism parents I know are constantly researching medical literature and are really on top of what’s out there. I have spent more time studying and learning autism than I’ve spent studying and learning in undergraduate and graduate school combined. And not every treatment works for every child. Over the last 8 years, I’ve done or continue to do no less (and much more – this is just want I can remember off the top of my head) than the following (in no particular order and with varying degrees of success): GFCFSF diet, GAPS, MB12, chelation, gcmaf, homotoxicology, homeopathy, Heilkhunst, SLIT, essential oils, cranial sacral, tomatis, HBOT, ABA, RDI, Sonrise, hippotherapy, HANDLE, SPEAK, OSR, RPM, and medical cannabis. And there is still a long list that I’m planning to research and try. So, talk treatments with respect and realize that you are likely speaking to someone who is somewhat of an expert in this area.

Don’t say, “I don’t know how you do it!”

I don’t know how I do it either. There are so many things that I pray be taken off my plate. So many mornings that I wake up begging God to get me through the day. 4AM tantrums that left me wondering how I was going to make it through work. Looking in the mirror and wondering if there was enough makeup in the world to cover the bags under my eyes. The answer is that autism parents do it because they have to. We have no choice.

But the real reason this is never taken as a compliment is because of what it means. You aren’t saying it to some rockstar mom who earns six figures and whips up gourmet snacks for the PTA meeting while looking fantastic in designer clothes and an aerobicized ass. We are fully aware that when you say “I don’t know how you do it” you don’t mean, “Wow, I wish I could do that.” What you are really saying is, “Thank God I don’t have to do that.” We get it, so don’t say it.

Don’t tell me that everything is going to be fine

There are a lot of things that aren’t fine for families with autism. Our children have a ton of medical issues that are often unaddressed and many are in constant pain that they can’t communicate. They are 40 times more likely to die from injury than their typically developing peers. A lot of families are facing bankruptcy. Parents are constantly fighting with the school district, the insurance company, and medical professionals. We have no idea what is going to happen to our kids when we are gone. We are working our asses off every day. And we hope and pray that everything IS going to be fine. But when you say that it is, it can sound more like a brush-off and a dismissal of how hard we are working than it sounds like a reassurance.

Don’t offer to help

This probably sounds ridiculous, since I just told you all the help that autism parents need. The truth is that we do want, need, and appreciate help … if you mean it. An offer for help is often said with no follow up. A quick, “Well let me know if there is anything that I can do” while you are praying that we don’t throw anything out there. So you absolutely can offer to help, but only if you are actually wanting to and prepared to help in some way.

The only person who can say anything like what is listed above is another autism parent (and even then, it depends). Again, I know you mean well. But now you know better.

So, what can you say? If you truly want to be helpful, you can say, “I have no idea what you are going through, but I’m sure it’s really difficult. I’m here if you need me. Is there anything I can do to help?” And again, only say that if you mean it. I promise you that we are very grateful for this sentiment, as well as all the help, love, and support we have received. So, thanks for understanding why there are some things we appreciate you don’t say.