Useless Advice for Autism Parents: Please Stop Giving It

If there's one thing I hear in my autism parents support group, it's complaints about the many pieces of "advice" that are offered at every gathering. Or every sort-of gathering. Family reunion, trip to the store, quick phone call, social media...you name it, we're flooded with advice. But unless you're an actual professional with actual experience and we've asked for a little help, don't offer up your advice. You're not helping. We know you mean well, but please stop.

Here are a few of my favorite bits of advice.


Make him socialize more. If he had to sit down to dinner with the rest of us, he'd learn how to cope.
My son does socialize. He has to go to school and figure out how to function without the world ending on a daily basis. It's a constant struggle, and we've made a lot of progress. And he does join us for family dinners. For about 5 minutes. Then he has my standing permission to go eat in the kitchen, or in the living room, or in the basement if that's what it takes to get him to finish a meal. Eating in a large group isn't something he can do yet. Stop bringing it up. Maybe talk about his accomplishments. Like how he didn't throw his dinner roll at someone before he left the table. Because...progress.


Have you had his hearing tested? I think he has a hearing problem.
Believe it or not, every parent of a child with autism has taken their child for a hearing test. It's not easy to get an autism diagnosis without having taken this little step. He can hear. Another hearing test is not going to magically make autism go away.


A time out will help with those tantrums.
First, they are not tantrums. They are complete meltdowns. This is a different category. It might look like a tantrum, but it's absolutely not. He'd not trying to get his way. He's so overwhelmed that he can not control himself. Not will not. Can not. A time out won't do anything. We have a coping mechanism, we're working through it. Please let our little process work.


My accountant's daughter's friend had a kid who used to have autism...
No. Just no. You can't cure autism, so your accountant's daughter's friend either doesn't exist or is an idiot. You're about to suggest some idiotic idea that has no basis in reality and might actually be something we already tried while we were new to the autism diagnosis and thought we too knew more than educated professionals. Check yourself before this comes out of your mouth.


Have you tried essential oils?
At this point I'll just roll my eyes at you. I love essential oils, personally. I use them all the time. And yes, I use lavender for my son, among other oils. Guess what? They don't fix autism. At the very best they can ease some of the more outward manifestations of my son's autism, but that's it. They're not going to stop the next meltdown. They're not going to make him eat food that isn't white, or whatever color he's into this month. And if you're bringing this up because you sell essential oils, just go away.


Feed him gluten free foods. Kids with autism can't eat gluten.
Please shut up. First, there is absolutely no credible research that indicates that gluten does anything, good or bad, for my autistic son. Second, he's currently eating 3 foods: dinner rolls, plain white rice, or chicken nuggets that I've picked the coating off of. Gluten-free is an excellent idea for people who have a legitimate medical condition that precludes the consumption of gluten. For my son, it would be a disaster. So hands off his dinner rolls. And please shut up.


Maybe if you hadn't vaccinated him...
Yes, I've actually had people say this to me. Actually had people I know accuse me of giving my son autism by vaccinating him. Let me be clear. If you believe that vaccines cause autism, we're probably not hanging out, so it's unlikely you'll be saying this to me. But you might know someone who has a child with autism, so keep your thoughts to yourself on this one. There's absolutely no evidence to support the claim that vaccines cause autism. None. Accusing someone of giving their kid autism is not helping.


Look, we know you mean well (except for people giving that last bit of "advice" regarding vaccines). You want to help. But these little gems are not helping. If you really want to help, ask what you can do to make things easier on the parents. Offer to play with the children while Mom takes a nap. Maybe do her grocery shopping for her. Or just give her a giant bag of dinner rolls for her little one to eat at every meal. There are ways to help. Just not by giving ridiculous pieces of advice.

Parenting Up to Ability, Not Parenting Down to Autism

I have two sons. One is neuro-typical, though legally blind, and the other is autistic. As a single mother who works from home, I have both of my children all of the time. It can be a bit of a juggling act, holding the autistic child back while encouraging the typical child to inch forward, but it wasn't until I spent an entire day with just my typical son that I realized I was doing it wrong.

One day I found myself taking one child to the doctor while the other went to school. My typical child, Tristan, had to go to the ophthalmologist, but there was no reason for my autistic son to tag along, so off to school he went. My older son, the typical child, was quite happy to spend a day just with Mommy, even if it involved a doctor, so off we went. The doctor didn't take long, so we decided on the zoo as something to kill two hours before we had to pick up his brother.

We'd been to the zoo many times before, but this was different. Always, when I had both kids, we had to be careful. Mustn't go near the seals or the little one would have a meltdown. Avoid the play structure area because it's too scary. And don't walk in the sand. Do NOT walk in the sand.

This time, however, there was an immediate difference. We didn't avoid certain areas. Tristan could wander where he would and I trotted calmly behind. He was free to explore without having me call him back because his brother couldn't cope.

And then it hit me. I was parenting down, satisfying the lowest common denominator, instead of requiring more of us all. I felt it was just more fair to say no rather than allow Tristan to do something while I was forced to keep his little brother back, possibly while having a little meltdown over whatever big brother was doing. Now, to be clear, Tristan had never once complained when I had to say no, or felt I had to say no. He's an easygoing child, one who adapts to what's thrown his way. But that didn't make it right.

I watched him at the zoo, watched his little personality bubble forth without needing to be held back, and I realized I wanted my younger son to have that experience too.

That's when I knew I'd been guilty of the same mistake parents of special needs kids have been making since the beginning of time. I was parenting to the disability, to the disorder, and not to my son. He is autistic, but he is not autism. Autism is a part of our lives, but it cannot be our whole life. If I constantly parented down, catering to the lowest common denominator, I was doing everyone a disservice.

Especially my older son. Sometimes it is all too easy to focus on the child with the most severe disability, to get tunnel vision. And we, all of us, too frequently use autism, or any special need, as an excuse. It's the reason a child doesn't go to parties. It's the reason we didn't take the family to the movies last weekend. It's the reason we didn't go camping last summer. And in catering to this, we're stifling the potential of all our children, not just the special needs children.

Autism is scary and sometimes unpredictable and frustrating (why won't you eat white foods!), and it can be difficult to not focus on it all of the time. But I knew, for the sake of my small family, that I had to try. I had to stop parenting down, and start parenting up. I had to get rid of the lowest common denominator altogether. I had to expect more of everyone, including myself and my autistic son. If I could do that, all of us, perhaps especially my older child, would have a better life.

It didn't happen overnight. As anyone with an autistic child will understand, you don't just toss him onto the terrifying sand and expect miracles. The process involved a lot of coaxing, a lot of patience, and pure stubbornness on my part. We were going on that sand. Maybe not on day one, but definitely by day three. And day four meant we were visiting the seals. My little one didn't have to like it, but Tristan loved the seals and it was about time everyone got to see what they wanted. Autism or no autism.

Yes, we spent every single day at that zoo. Then we hit the playground to repeat the entire process with the rope bridge. Again, he didn't have to walk across the rope bridge himself. He just had to not have a total meltdown when his brother ran across it. Not too much to ask.

I no longer allow the, "Your brother doesn't want to," or the, "Your brother can't do that," to be a reason for not doing something. We even went to a movie as a family, and that's not something my little one likes at all. Too much of everything going on in there. But...too bad. One movie won't kill him, and we did something he wanted to do right after. Yes, it was hard. Yes, it would have been easier not to. But easier is not right.

Tristan, my older son, matters just as much as my little one. He is a whole child all on his own, a whole person with thoughts and feelings that count. He is one half of all the children I'm ever going to have. He needs to take center stage a full half of the time.

That was more than two years ago now, and autism is still with us. There is no cure and my little one will never love the sand. He'll also never truly enjoy going to a movie. But he copes. He copes for his brother. He copes for me. And he copes for himself.

He is only one half of my children, after all. The other half deserves the freedom and joy he now experiences every day.

Please Label My Child

My younger son is autistic. He's 7 years old now, and he was different from the start. That means 7 years of dealing with doctors, schools, aid workers, IEPs, and other parents. It also means I've had 7 years to get used to the label. To know that my son is indeed autistic. To get over the denial most parents of autistic children go through.

In those 7 years of dealing with my autistic son, I've heard dozens of parents say, "I don't want them labelled." And I never understand it. I can't fathom why any parent would shy away from a label that will only help. Here's why I haven't resisted having a 'label' for my son.

1. It's not about me. His diagnosis, his label, his IEP. Not mine. Putting my head in the sand and pretending he's not autistic is for my benefit, not his. It doesn't help him, and it can hurt him by not allowing him to access the services he actually needs.
2. Everyone has a label. I was the smart one. My older son is the mouthy one. His best friend is the shy one. Labels all. Because my younger son is only 7, his classmates don't know too much about autism. So he's the weird one. He's the one who flaps his hands. He's already labelled. I might as well make sure it's the correct label.
3. A label is practical. I know that's not a fun word. But sometimes practical is necessary. Having a single word, a single diagnosis, to describe my son means I don't have to spend 4 hours explaining his problem. And he does have a problem, so I can't afford those 4 hours anyway.
4. A label means he gets help. Even with that label, it's hard to get help, especially in the schools. IEPs don't grow in trees, after all. The law might say your kid is entitled to a free and appropriate education, but if you don't have a label, your special needs kid WILL slip through cracks. It's going to happen.

One thing I've learned over the last 7 years is that none of it is about me. My discomfort isn't important. What is important is my son. He needs certain services, and those services can only be accessed by those with a firm diagnosis.

So I got over myself and learned to accept what was. My son is a beautiful, loving, smart little boy who happens to have autism. That label doesn't lessen who he is. It just means he has more opportunities than he would have without that label.

Why I Don't Homeschool My Autistic Son

My youngest son is autistic. I knew this since well before he started school. I knew he was different from the time he was a month old and wouldn't eat if someone was touching him. I've known since he'd tap his fingers together, just staring at them as if they were the only thing in the world. I've known since BEFORE the doctors told me. My son is autistic and it's my job to protect him. I'll do anything I have to.

Not long after his official diagnosis, another mom I know, one without a special needs child, said to me, "Of course you're going to homeschool him." That would be best, right? Keep him at home where he's most comfortable and control what he's learning and how he's learning it. Sounded great at the time (he was 4, so it was 18 months before he could start kindergarten). At that point, he'd been in daycare for just over two years, and it had been a hard two years. Even with a worker with him every second of every day, daycare was hard. I couldn't help but imagine school would be so much harder.

After much debate with myself, I decided to homeschool my youngest. Then, thankfully, I got my head on straight before the month was out. What was I thinking? It would be a horrible idea! And here are just a few of the reasons why.

1. I have to work. That was the reason I'd been forced to use daycare in the first place. As a single mother, I don't have the option not to work. I may work from home, but in a typical day (Monday-Friday) I work about 12 hours a day. There's no way I can do that and teach a kid anything useful. I had to schedule in teaching my older son to tie his shoes. I couldn't possibly schedule in teaching my younger son all day every day.

2. I'm not qualified. This is probably my biggest problem with some of the people who homeschool. Let's face it, just going to school doesn't mean you can teach. I may have been the top scoring student in math, sciences, and English in my division, but I don't think I can teach all those things effectively. I'm a professional writer, not a professional teacher. So I thought I'd better leave it to the pros.

3. The world doesn't revolve around him. MY world may revolve around my children, but THE world certainly doesn't. My son is relatively high functioning. He still gets a worker at school, but one day, with help and proper preparation, he'll be able to live a mostly independent life. And when he's out there, living independently, he'll quickly discover that the world doesn't adapt itself to him. Not comfortable leaving the house? Unless you can get a job right away that involves staying in your house, you're kind of out of luck, kid. Can't cope with the people? People are everywhere. Get used to it. I could go on, but what's the point? The world is the world, and as kind as some people are, the world itself doesn't care that my youngest is autistic. If I keep him home now, it'll take all the longer to help him cope with the world outside our small family. And he does need to cope.

4. I like being "Mommy". I love the relationship my son and I have. I'd be fooling myself if I thought that relationship would stay the same if I was both "Mommy" and "Teacher". Let someone else deal with teaching him to read and how to walk in line (this has been one of our greatest struggles, actually). I want to be the one who teaches him how to smile and how to play.

5. Schedules are great. Not for me. I'm a nutty writer who can't remember what day it is without my calendar and three reminders from my phone. But my son lives and dies by a schedule. Having to get on the bus at a certain time EVERY DAY and not having the option to change that, EVER, is really good for him. He lives by the clock. I, however, can't. I don't think we'd mesh very well in the homeschooling department. In fact, if he was harping "Mommy, time for snack," at 10:30 EVERY morning, I'm pretty sure I'd totally lose my mind. I never do the same thing at 10:30, and with very good reason.

6. I am so tired of transitions. This is selfish, and I know it. But, as most people with autistic children will tell you, transitions just plain suck. You can prepare an autistic child for it as much as possible, but that transition that's looming before you is still coming, and it will still throw him for a loop. If I can make transitions someone else's problem, you can bet I will. Because Mommy needs to breathe for a minute.

7. He loves his brother. My older son is exactly 2 years older than my younger son and they're quite close. Whatever big guy does, little guy wants to do. And big guy loves school. The friends, the teachers, the bus, the smell of the classrooms (don't ask), he loves it all. No way would I pull him away from that, and no way I would force one kid to stay home and watch his brother skip onto the bus with a smile. That's just not fair.

8.I have no attention span. Seriously. I'm worse than he is (almost). I'm the writer who works on 9 different projects on any given day. Maybe 12. Teaching my son academics would require me to actually take medication to pay attention, and that medication actually curtails my creativity (I know, I've tried it). If my creativity is curtailed, I can't do my job. No job, no food on the table. And now we're starving.

9. I want him to be exposed to ideas that aren't mine. I've thought a lot about this one, and talked to many homeschooling parents who claim to homeschool because they want to control what their kids are exposed to. I don't need that much control. I want my kids exposed to as many different ideas as possible. I LIKE having no control (or very little) over the diversity of education my children receive. I'm not always right, after all.

10. They have more resources than I do. Unless I somehow win the lottery, I can't afford the resources the school brings to the table. I simply can't. Those resources are invaluable, especially for my autistic son. These resources include a full-time professional who is there specifically for my son at all hours of the school day. She is amazing. I can't afford her salary, and I can't keep her prisoner in my basement, so off to school my little guy goes.

This last reason was more than enough to convince me that my youngest was better off in public school. Don't get me wrong, I have only respect for those parents who pull off homeschooling effectively (let's admit that not everyone does), but for my autistic son, it's not the best option. Does he love school? Well, no. But he's slowly adapting. Grade 1 is wrapping up and we'll keep plugging along whether he likes it or not. Because we can't always love what's good for us, and what's good for him is going to school every day.