[Editor’s Note: We cannot explain why there are no spaces between paragraphs in this blog post. The formatting is inexplicably not working properly.]
Okay, this is a long post, but now that I consider myself a veteran autism parent, I have a few ideas to share about how the world could be a better place for autistic people and their families.
The journey to getting my son’s autism diagnosis was hard, for two main reasons. (And I think many people have a similarly difficult time, though of course everyone’s experience is different!) First, I was coming to terms with the fact that my child is “atypical.”. When I had my son, I started reading those Baby Center newsletters. They always discuss milestones and then say, “But don’t worry, every kid is different! Never compare your child to another child.” Then all of a sudden, as you start down the path to the diagnosis, everyone is saying, “Well actually, your child is too different. He doesn’t talk enough or say the right things. It’s wrong that he likes to play with the same toy for 30 minutes. It’s wrong that he doesn’t do pretend play. It’s wrong that he doesn’t look at people.” (To be fair, no one used the word “wrong.”. But just by the fact that your child is being diagnosed with a “disorder” it’s hard to avoid the implication that the behavior is wrong.) I felt sad and guilty for not realizing earlier how “wrong” my child’s behavior had been, but at the same time angry at all these “experts” who didn’t have a single good thing to say about my beautiful, intelligent, amazing child. No one cared that he could take any set of objects (e.g. a bunch of pencils) and form them into the shapes of letters. No one liked the way he played – drawing letters over and over in the sand with a stick is “wrong,” but building a sand castle is OK. Learning the sign language alphabet was an “unusual hobby.” (Of course now, in hindsight, I can certainly agree that that was a somewhat unusual hobby. But when that came up during our diagnosis I bristled because I felt that the word “unusual” did not literally mean “not usual” but in fact “bad.”
Second, my husband and I essentially had a ton of extra work dumped in our laps. Speech therapy, occupational therapy, ABA, developmental preschool. There were assessments and SO MUCH PAPERWORK for each of those things. And “homework.” The speech therapist would say “work on XYZ” and the OT would say “have him practice XYZ” etc., and I felt like I could never fit it all in, not to mention that it was stuff that my son didn’t *want* to practice. Oh, and by the way, I had a newborn baby! And given that half of his childhood was being taken up by therapy, I didn’t want everything for him to be work, work, work all the time. I tried to tell myself that letting him line up letters for 30 minutes was not a *wasted* half hour, that was just him being a kid and playing how he plays, but I was never quite sure if I was doing the right thing! (For the record, we are four years post-diagnosis and Tuffy is doing incredibly well with making friends, keeping up at school, and just being amazingly well-behaved to the point that people who meet him now literally don’t believe me when I tell them about his meltdowns, so clearly I did execute everything perfectly despite all my fears! Or just maybe, autistic kids are super resilient just like all kids. But I definitely had some part in it!)
Given how hard the diagnosis process and early post-diagnosis months are, how could it be better? How should this process go? I believe that some of the first steps should be about supporting the parent(s). For one thing, many autistic children do NOT sleep well, so not only do the parents have to deal with the issues I just described but they’re doing it on very little sleep. It is SO HARD to do anything other than just survive when you’re not getting even close to enough sleep (and the sleep you do get is fragmented!). It takes energy to work on goals with your child, especially behavioral goals. Not to mention the fact that you’re also probably emotionally exhausted if your child has big meltdowns. It’s just hard when someone regularly screams at you (and in some cases physically attacks you – my son didn’t do this but I hear this from a lot of autism parents). It doesn’t matter that the person is a small child and you know not to “take it personally.” It is still just hard. So you spend a lot of energy walking on eggshells to avoid the meltdowns. For example, Tuffy used to have a very strict routine around opening his yogurt in the morning. If my husband started opening the yogurt (not permissible – Tuffy had to open it himself) I’d dive across the room in slow motion yelling “Nooooooooo.” (I didn’t really do this, but you get my point.) And God forbid the lid ripped while Tuffy was opening it, because if we couldn’t get every visible molecule of foil off of the plastic yogurt cup, the scream-fest was about to begin. (By the way, if you’re reading this and thinking that we were just coddling him with his yogurt whims, please, please believe me that that is not how autism works.)
So, after years of raising an autistic child that you didn’t realize was autistic, sleepless nights, endless paperwork, judge-y stares and comments from parents or others who don’t get why you won’t take your child to the grocery store, why you can’t get him to wear his coat, etc., you finally get to the diagnosis, at which point things are supposed to get better. But what actually happens is that you get to hear a whole bunch of stuff about how earlier diagnosis is better and then feel guilty for getting your child diagnosed “too late,” even though you probably had multiple doctors dismiss your early concerns anyway! (Of course, it’s more and more common for kids to get diagnosed quite early, but in our case Tuffy was over 3 and I got to hear a non-stop stream of praise for “birth to 3” intervention and how AMAZING it is if you can start services in that “critical window of brain development.”) Then you’re given a list of ABA providers that are covered by your insurance (if you’re lucky) and sent on your way! Never mind that most of those providers have long waiting lists so that critical time is ticking away as you frantically sign up for waiting lists as fast as you can fill out 30-page intake packets!
Here’s what should happen. First, support from other parents is SO CRITICAL. One of the first things I asked after we got Tuffy’s diagnosis was, “Is there a support group?” and the psychiatrist said, “Oh, I think XYZ has one.” So, I looked online and found that that group is only for people who receive their diagnosis through XYZ (which we didn’t.) This is just ridiculous. Providers don’t necessarily need to facilitate these kind of groups, but it should absolutely be part of their job to know as much as possible about what supports are out there (including stuff like local Facebook groups!) to educate parents. Autism is not just a medical issue, it is a life issue. There is SO MUCH that you cannot learn from therapists and doctors (unless they happen to have autistic children themselves!) I mean, just imagine raising a neurotypical child with only the information you get from your pediatrician. Never having a mom-friend or family member who is also in the midst of raising a neurotypical child, who you call and say, “Hey, he won’t take the bottle,” or “Do you let your kid nap in the car?” or just commiserate about anything and everything! You probably won’t come into an autism diagnosis knowing that some parents do a TON of ABA and some choose not to do any. You won’t know that you’re not the only parent who plans their day around not using public bathrooms, because your child can’t handle the noises from the hand dryers, or that you’re not the only parents who has lost your child and that some parents get GPS trackers for their kids. You won’t know what places are good for autistic kids to take swimming lessons. You only know what providers are telling you, and let’s face it – they are almost all wonderful, caring, hard-working people, but they don’t live autism 24/7. (Sorry for being super cynical, and I’m not directing this at anyone personally, but on some level I do believe that the fact that they are also trying to stay in business shapes their views on therapy to some extent.)
Second, the parents should go to at least one session with a therapist who specializes in autism. Let’s face it, no two people on earth have the *exact* same ideas about parenting, but it gets compounded when you start throwing in all these interventions. Some parents are more “pro-therapy” than others. Some are more skeptical about autism than others. Most are struggling with some level of grief as they figure out how to revise the (often subconscious) expectations they had had for how their child’s life was going to go. (Not to mention revising expectations about how our careers would go and weighing whether or not to quit our jobs and/or give up on other ambitions! Ahem, this was me.) This stuff is hard, and getting the parents to a place where they can be united would probably do at least as much for the child than many hours of therapy!
Finally, sleep issues need to be HIGH priority. We didn’t start Tuffy on melatonin right away because providers were pretty wishy-washy about it. I wish they had made it more clear that it’s not harmful to try and that it’s worth trying if your child has trouble sleeping, because getting more sleep is really, really good for your child and yourself. You need extra patience to raise an autistic child, and patience is so hard to come by when you’re sleep deprived. By the way, your child needs sleep, too! I believe that starting melatonin improved Tuffy’s behavior more than any therapy we did.
One last thing – before all of this, newly diagnosed parents should just get a spa day to rejuvenate for the work ahead! ; ) I’m not sure our health insurance system can cover that, but if you have a friend whose child gets a diagnosis and you are able to pamper them a little bit, please do! It’s going to be an emotional time no matter what, but if society’s reaction was to celebrate the fact that the parent had put a lot of time and effort into getting that diagnosis and was really invested in learning and doing what’s best for their child, I think that would be cool.
Econ-Mom, my heart really goes out to you hearing all of this. I know that SC1 is not autistic, but between severe speech delay, poor speech articulation, daily temper tantrums, sensory processing issues, seven severe food allergies, and 5 hours of chopped up sleep per night while also taking care of a newborn, I really do appreciate how hard it can be. (I was so sleep-deprived that I was on high blood pressure medication for about a year after having severe preeclampsia with SC2.)
I was constantly asking specialists if SC1 was on the autism spectrum and constantly being told she was not (basically because she made eye-contact). But there is also this really difficult parenting-space to exist in when your child is not developing the way you expect (based on the development you see in her peers), but you also can’t get a clear diagnosis. (We only finally got some answers after a neuropsych evaluation in third grade.)
If it had been any harder, I would have needed a support group. So, I 100% agree that specialists and providers should be offering and providing that kind of information to parents struggling to get through the maze and the days (daze) of parenting special needs children. In the end, I survived because I made friends with a mom in my neighborhood who had a child on the autism spectrum, and she and I could relate to each other’s struggles.