Putting this first: For an explanation on why I (and many autistic people) use Identity First Language (‘autistic person’) rather than Person First Language (‘person with autism’), see this great article.
I’ve been an ‘autism parent’ for a lot of years now; I love when friends send new autism parents my way for advice seeing as I have all the answers.
Okay, all right..
When we started out at this parenting thing we had all the answers, as you do. Then we had our autistic child first and suddenly were in the deep end of the parenting pool with no good answers and all the anxiety. Eventually, a second child came along and showed us that ‘normal’ kids are lovely.. yet come with their own set of challenges that are frankly underestimated and underreported. And now, many years later, we have a third child who presumably is on the autism spectrum or.. something (I don’t know, I’m not a doctor), and maybe our pendulum swung too far to the other side but we have yet to see her brilliance and character as something pathological requiring a diagnosis.
I see so much of my childhood self in her; if she needs a diagnosis then so do I (which has the potential to be an entire other future conversation).
Anyway. Three kids of varying neurological makeups later, here’s my moral of the story of parenting:
You, the parent, are the adult. Your child does not belong to you, they are a separate person deserving of respect and value. However, as the parent, how YOU react or respond to your child not being what you were expecting/hoping for will have profound consequences.
We were in our very early twenties when we had our son, and knew within his first two months that he processed the world differently than other babies do. When he was diagnosed with autism at the age of 3 it wasn’t a big surprise as autism is in my family and, although not formally diagnosed, is fairly clearly in my husband’s, as well. Knowing autism is genetic was a huge blessing, actually, because we never for a minute bought into the whole ‘vaccines cause autism’ hoopla that coincidentally kicked up right around that time.
Our son did have some speech therapy when he was 3, but no Applied Behavior Analysis (ABA, which is basically compliance training to get a child to act ‘normal’) or any therapies outside of what was offered at preschool, mostly because I didn’t like the idea of having people in my house all the damn time. So yay, my selfishness ended up being a parenting win seeing as how an overwhelming number of grown autistics are now saying they have PTSD from ABA.
Let’s just ponder that for a second. What does it say to you about society in general when I can be proud that at least I did not put my autistic child in a culturally-approved but emotionally-damaging program? Or physically damage him with one of the many culturally-approved ‘cure’ treatment options available?
It can be a hazardous thing, to be different. See what I mean, how parents’ perspectives and reactions can have huge consequences?
So yes, when your child is diagnosed with autism go ahead and freak your freak out for a while, and then get your head back on straight; the sooner you can get past yourself and your expectations, the better. Nothing sets the tone more for a child’s future than the way his or her parents feel about him or her, and if you allow yourself to believe that your child is broken, flawed, or a tragedy, you are selfishly making YOURSELF a huge block that keeps them from flourishing, thriving and meeting their full potential.
Okay, I am aware that to some I might as well be asking for the moon by saying to just choose your mindset. It’s hard when you have had two or three years to make your own fun plans of what your child could become. Sure, a lot of that time is spent in straight-up denial fueled by conversations with well-meaning people (“Einstein talked late, too”, “Boys are slower than girls”) but those years of expectations are still hard to give up and switch to something different than you had in mind.
Parenting is tricky enough. Parenting kids who are different than what society calls ‘normal’? Colossally harder. I’ll give you that. This doesn’t mean you never need to discipline or guide, but you do have to realize that all behavior is communication. Your child is not being bad intentionally; calm down, put your mystery-solving cap on, and think. Ask yourself what happened in the day or hour leading up to the behavior – it was probably something avoidable.
A retired teacher made our son MELT DOWN HARD within three minutes because she could not stop asking him questions. A doctor with a lovely bedside manner wasted the 5-minute window to get anything done by taking the time to explain his stethoscope. We didn’t trust our gut and a teacher with twenty years of experience was responsible for causing our son’s worst year in school. So, if it makes you feel any better, sometimes the people who imagine they most know what they’re doing can be the most obtuse ones.
You need to become your child’s biggest advocate and ally, spotting potential problems and creatively problem-solving hopefully ahead of time. That may look like getting McDonald’s fries before going to Grandma’s for a holiday meal. Or the doctor’s office. Or pretty much anywhere. It may look like getting a portable DVD player because you have the one kid in the world who doesn’t like iPads. It may look like finding a dentist who lets your child visit a bunch of times to get used to the office long before they even try to look in his mouth.
You may need to pursue medications for your child to function with the anxiety and other side difficulties that are known to tag along with autism. Or maybe not. Either way, the important thing is that your entire family is able to function.
You definitely need to hook up with relief and support services offered by your country’s government. Unless you’re in a developing country, there are government relief services for families of disabled children. Seek outside support BEFORE you get overwhelmed.
I will tell you, it got easier once our son was in school full-time. Those early years, one-on-one all day with an autistic toddler, then preschooler, then realizing how different my child was than other kids.. it was tough. Before he learned how to talk enough to request what he wanted, the frustration levels were off the chart for both him and us. A few years ago when I read that Autism moms have stress similar to that of combat soldiers I thought, “well, duh. That’s no surprise”.
So, for kicks, here’s an article on combat soldier tips for dealing with stress. And here’s another one about strategies elite soldiers use to combat fear – I like it because it suggests and explains the benefits of things such as: finding the (potentially dark and inappropriate) humor in a situation; breathe; talk over the voice in your head; don’t keep it bottled up. Basically the things a family counsellor would tell you, but this has more camo.
I’m sure life got easier for our son, too, once he got to go to school with the routines and the schedule and the trained professionals who aren’t emotional basketcases like his mother. Seeing as I’ve talked about it before, read this blog post of mine and also this one to get an idea of how much I came to appreciate the educational aides, teachers and various professionals in our life. Many have become practically family to us over the years.
Yes, follow a few autism parent blogs if you’d like (there are LOTS of us), but honestly the best people to listen to are people who are themselves autistic. I cannot stress enough how important it is to immerse and surround yourself with the words, lives and observations of those most like your child, not necessarily most like you. It is essential to intentionally set a positive tone in the info you allow into your head about your child.
With that in mind, here are some of my favorite Facebook pages to follow (most are blogs, too, but I for one mostly live on Facebook):
- Diary of A Mom
- Unstrange Mind
- The Thinking Person’s Guide To Autism
- Respectfully Connected
- Michelle Sutton Writes
- Radical Neurodivergence Speaking
- Invisible Strings, which is where this brilliant quote comes from –
And also, I feel I should give you a bit of a warning before you go on these pages (Diary of a Mom is a mom of an autistic daughter, Michelle Sutton Writes has autistic children and is herself autistic, and the others are written by autistic people): a lot of adult autistic people have a fairly negative opinion of neurotypical parents of autistic children, and for good reason. You never know how many of them had well-meaning parents who thought they were doing the right thing when they tried to cure/fix the autism out of their child. And now those kids are adults and many are finding their voices online thanks to the miracle of technology, YAY! But they understandably may have some MASSIVE ISSUES to deal with.
We autism parents tend to think we are the experts, the unsung heroes. Newsflash: we are not. Not to put too fine a point on it but we are definitely not the experts and, collectively/historically speaking, our actions have often been less than heroic.
So, if you do comment on a page run by autistic person(s) do so respectfully, don’t use sarcasm as some may not understand it, and don’t take anything personally. They’ve been fighting for autism and disability rights for a long time. They live it. Even if you think they’re nothing like your child, they actually are more than you know and you would be wise to pay attention, stay quiet, and learn. The window into their perspective is invaluable and is as close as you’ll find to a window into your child’s point of view.
And also (this is massively important, could be a whole other blog post and is true for any person) – respecting your child’s humanity means to protect their privacy; your child deserves to not have every detail of his or her life analyzed and talked about on your social media or in conversation. I know this one seems tricky in a culture where oversharing is just what we do, but avoid lamenting about how tough you have it, using really specific and personal details about your child. Sure it’ll score you buckets of attention and sympathy and Likes, but the internet is written in pen – it’s entirely possible that your child will grow up and Google their name in a few years and what will they find?
Really, the most important morals of this story: your child is still the same child before and after diagnosis, and although they will possibly take the ‘scenic route’ for hitting milestones, it is not guaranteed that they for sure never will. Life skills are important, but what matters more is that children have a safe, accepting and loving environment to live and grow.
Presume competence: Assume your child is hearing and comprehending EVERYTHING regardless of whether or not they seem to be paying attention.
Same as with any other child: don’t compare them to other kids, just love and respect them for who they are and enjoy the ride. Sure, YOU will likely have to change and grow up more than the average parent maybe does, but you have been given a tremendous gift in a child who pushes you, depends on you, REQUIRES you to be a better person than you planned.