I started blogging about autism, and being the parent of an autistic son, 5 years ago. My main goal was to help myself make sense of it all, to understand my own feelings about my son’s autism. Here is some of what I’ve figured out.
I hope it helps.
Parenting is a challenge, no matter who your kid is. No matter what you do, someone somewhere will tell you that you are doing it wrong. If you are already a parent, you know what I mean.
How many times have you heard someone tell you that your kids should spend more time outside, less time on the computer or with their video games, more time reading, less time on the phone; that you should spend more / less time with them, give them more / less independence, etc etc. It is no different being the parent of an autistic child, except maybe for the passion with which complete strangers will tell you how poor a job you are doing.
A few things you can expect to hear from others, or read in blogs, etc:
- “If you don’t start with intensive early therapy and treatment, there is no hope for your child.”
- “If you start with all that intensive early therapy and treatment and try to change him, he’ll be emotionally scarred for life.”
- “Why are you trying to mainstream him at school, he would be better off in a special placement.”
- “Why aren’t you pushing for a mainstream placement, that is where he should be and the school just needs to suck it up.”
- “You can’t blame that person for getting upset, that outburst was quite disturbing and invasive to others.”
- “Screw that person. They need to just get over it an realize that everyone is different and has the right to be who they are.”
- “You need to cure your child of this terrible affliction, recover him from the damage that has been done and get on with your life the way it was supposed to be.”
- “Your child doesn’t need a cure, you need to accept that he will be different, that your life will be different, and that you need to just get on with it.”
These are, of course, examples from the extremes. But you will quickly find that there is not, in general, a lot of middle ground in terms of how people will judge you.
In your readings and explorations of autism, you will find that there is no known cause, and that some people think that vaccines are the cause. Some will even say that there is no cause (or least no need to find a cause).
Those who think it was caused by vaccines will try to convince you that you need to cure your child through diet or other types of medical procedures, some will say you need intensive behavior therapy. Some will tell you there is no need for a cure.
These are all things you will have to decide for yourself.
As you learn more about autism, you will also find yourself learning more about autism advocacy and all the forms it takes. There are groups of parents, medical professionals, and others that will tell you your child has been poisoned by vaccines and that you need to cure (or “recover”) him through diet or other medical treatment.
There are those that will tell you that you need to cure your child through intensive behavior therapy. Many, though not all, of these advocates will also help you understand the accommodations and supports that you will need and are entitled to. Then of course there are all of the organizations that have formed to promote these various forms of advocacy.
Importantly, the vast majority of these advocates are not autistic themselves.
Once you realize this, you will discover a separate world of autistic autism advocates. You will quickly find that, despite the stereotypes, all autistics are not the same. You will hear that your child wasn’t poisoned by vaccines, or anything else, and that there is no need for a cure. You may also hear or read that some autistics do want to be cured.
You will get plenty of advice – some good, some not so good – about how to raise you child from the perspective of someone who used to be an autistic child. You will hear from autistics diagnosed as adults, and learn what their life was like as an autistic child without the benefit / burden of a diagnosis.
A while back, autism blogger Lisa Jo Rudy challenged parents to “quit autism for just one day.”
Your child with autism may always be autistic, but there are places and circumstances in which it either doesn’t matter – or in which your child’s special talents make autism irrelevant. Whether it’s at the beach, in the woods, at a concert, or creating a work of art – just for one day – go somewhere where autism doesn’t matter.
Just for one day, quit being the parent of a child with autism. And become just a plain, ordinary, loving, proud parent.
Everything I’ve learned about parenting an autistic child can be boiled down to an incredibly simply stated idea (provided to me by a fellow autism dad): Parenting is parenting. My response to Lisa’s challenge reflects this attitude:
Just one day? Every day should be like that. At the very least, every day should start like that. You can’t always control how a day will end up, but only you can control how your day starts.
I am the parent of a trampolinist. I am the parent of a horse-back rider (equestrian?) I am the parent of two pianists. I am the parent of two high school students. I am the parent of two avid gamers. I am the parent of an autistic son and an NT son.
I am, to use your words, “just a plain, ordinary, loving, proud parent.”
Every day.
Everyone will have something to say about how you raise your autistic child, most everyone will judge you in one way or another. In the end, of course, the only person’s judgment of you as a parent that matters is your child’s. All you can do is be a plain, ordinary, loving, proud parent.
Everything else is just details.
no straight lines 
Very true, Brett.
So much conflicting advice, but at some point we have to make our own decisions. Right now I’m the middle of a huge inclusion vs. special ed classroom dilemma. I think the answer will reveal itself to me in due time.
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As the grandparent of two autistic children -siblings, ages 6 and almost 4 -sometimes, reading/talking with others about autism and the quirks many of those with this disorder have can get really confusing. Take the terms “recovery” or “cure” and “acceptance” for example. Some pray for a cure, for a recovery for their child or for all who are autistic, others say they just want their child (or all) accepted for who they are.
What exactly is meant then by the terms cure and recovery?
As I see it, my grandchildren are perfectly beautiful children with some difficulties in a few areas. One of the areas -for them -is with behavior and those nasty meltdowns that can occur. Children who are regarded as “normal” or NT also have issues with those aspects in life too but I think any parent worth their salt would want to correct those children, to get their behavior to be in line with what the majority of others around would prefer to see. Well, if all “we” (as parents/grandparents) who are raising/teaching children with autism want is acceptance, then don’t we want to teach what is considered to be relatively normal behavior then too? Does using whatever methods work best for each child to help that child on to a life of being a better behaved individual then mean we are not accepting the diagnosis of autism or that we are touting that recovery or a cure is where the path we have chosen will lead us?
I agree with your premise that parenting is parenting -regardless of what “issues” accompany each and every child -autistic or not.
I love my grandchildren with every ounce of my being but I will not tolerate when they are mean, when they bully their sibling, when they are intolerant too of other children, of adults as well. Manners can and SHOULD be taught to all children -regardless of any diagnosis of any type. And learning good manners as a child, allows for more tolerance and from that, more acceptance then too of children with autism. It does not detract one iota from who or what that child is, inside or on the outside. The autism factor is still there and they may have to work a bit harder at times to remember the basics of good behavior, which in turn can lead then to an ease in acceptance by the public in general -which so many parents say they want for their children.
So, because my daughter and I (as the chief caregivers/teachers) try to employ whatever means we can to teach these two youngsters how to behave properly in public as well as at home say that we are not accepting these children, that we are working for a cure or for recovery? Or does that aspect of how we live our lives with these two children say that we love them, that we do accept them for who they are, for what their abilities (which are many) can, do and will provide for them and that as a means to enabling them to grow -physically, mentally and emotionally -we are then opening more and more doors to a better future for them?
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@Leila,
We went through the struggle of public school inclusion or a “separate” program as well, several different times through the years. In our son’s case, a “separate” placement was much more appropriate – and meaningful – for his K-8 years. After a bit of a transition period, he was able to fully integrate into a public high school.
Though many will disagree with me, Inclusion or “separate” are not in and of themselves inherently good or bad. It all depends on the kid, the teachers, and the actual program.
Good luck.
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@Jeni,
It sounds like you’ve got a pretty good handle on all this. I agree that manners, etc, are important to teach to our kids, even our autistic kids. It gives them a sense of what it means to be a part of a community (whether they want to or not).
One of the big questions that we struggle with is what constitutes “appropriate behavior” in public? Obviously, bumping into people, standing in their way, etc. is inappropriate.
But how about that little running/skipping thing that many autistic kids do? Singing along out loud to the music playing through the mall sound system?
Lots of questions, not so many clear answers. I think much of this comes down to “in the eye of the beholder”, and many of the beholders for some reason take it as a personal offense when someone does something they don’t think is right.
Thanks for sharing your insight.
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In the book, “Learning Outside the Lines” Jonathan Mooney and David Cole talked about growing up with LD and ADHD. One of them talked about “Mental Health Days” that their mom used about once a month to get the heck away from it all….mainly school.
I always loved that idea, and we often had mental health days when Ben was in school.
It was so much harder for him than 90% of the other kids. He worked for hours on homework to keep up.
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Yup!
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To all of you that have responded to Brett’s blog, he and wife Julie are outstanding parents.
Brett, I just read your “blog” and I have always been proud of you, not just now, but when you were a “kid” too. You and Julie have worked very hard to get to where you are now and; again, I am very proud of you and Julie. You both are wonderful parents to Zeke and Ian and it is very obvious you are so very proud of your sons.
Not everyone understands what happens when you have an autistic son or daugther, but through the years with what I have experienced in your family, you and Julie keep your cool in some difficult situations, when I know that sometimes you both feel like exploding.
For those who might be reading this . . . I am a proud mom of Brett, proud mother-in-law to Julie, and proud grandma of Zeke and Ian.
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@Rose,
I like the idea of “mental health” days. Something that everyone could probably use every now and then.
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@VAB,
Thanks for stopping by and commenting, good to see that you are still involved in autism blogs. I saw your farewell post, and completely understand.
When I stopped my original autism blog, I really didn’t expect to still write so much about autism. I thought I’d said everything that needed to be said.
What I’ve found, though, is that the lessons I’ve learned from autism apply to my professional life, and many of the things I’ve learned in my professional journey can be applied to understanding and accepting autism.
Would love to see an update on your journey. (And the 1 year anniversary of your last post would be the perfect time for something like that!)
Hope all is well.
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@Ann, um I mean, Mom:
😀
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