The other day, a news article popped up in my Twitter feed about new CDC numbers regarding autism.
I linked to the article on my Facebook page and a friend asked me what my thoughts were. Was it just a reflection of more accurate reporting or is autism truly on the rise?
It’s an interesting question.
I’ve said before, and I’ll say it again, that I believe Autism Spectrum Disorders to be genetic, possibly with an environmental trigger (or not). Of course, I’m not a scientist, nor do I play one on TV, but the longer I’m in the autism community, the more I see that it tends to run in families. I’ll touch more on this in a bit.
I think that the higher numbers reflect more accurate diagnostics and reporting, not necessarily an increase of incidences.
I think that health providers, teachers, and parents are getting better at recognizing the signs of ASD. Contrary to my experiences with Simon (and George), I believe that most doctors are willing to listen to parents when it comes to their child’s developmental delays. ( I am still livid over being told that, despite already having one child on the spectrum, George’s previous doctor told me that it’s perfectly normal for him to be delayed and that I was just being scammed by the Early Intervention provider.) I think doctors are getting better at routinely asking specific questions regarding possible delays.
I also think that as there is more understanding of autism, the stigma is lessening to a certain extent. It’s possible (and this was touched on in the article) that in the past, doctors may have hesitated to put the “label” of autism on a child who may have been mildly affected. A lot of symptoms of ASD, SPD (sensory processing disorder), and ADD/ADHD (and others) overlap, sometimes significantly, so it’s possible that children were receiving mistaken ADHD diagnoses (for example) when they may, in fact, be on the spectrum.
There’s a flip side to this argument, too, that could *possibly* explain some of the increase in diagnosed ASD cases. It’s possible, just possible, that some providers are giving children an autism diagnosis, even when the child may instead just have SPD with a speech delay, or motor issues with cognitive delay, or whatever. Is ‘autism’ becoming the go-to diagnosis, much like ADD/ADHD was a while back? I don’t know. We must also consider that there are therapies and assistance available that you can only get if you have an ASD diagnosis, so it might be possible that some providers are giving not-quite-qualifying children the diagnosis in order to make sure they get the help they need for other disorders. For example, SPD is not in the DSM V (I don’t believe, anyway), so trying to get those children help or appropriate IEPs in school can be next to impossible.How do you convince a school that your child needs special accommodations for SPD if you can’t prove that SPD exists? If an ASD diagnosis would help them, then why not? Or imagine, if you will, a child who is exhibiting, let’s say, significant sensory and motor planning issues, maybe even has a speech delay, but does not meet the full diagnostic requirements of autism. However, her doctor and Early Intervention therapists feel that she would benefit for ABA therapy. But, and this is a big BUT, you can only get ABA therapy covered by insurance or Medicaid if you have an ASD diagnosis (and even then only if you’re very lucky). What happens to this child? Her parents can’t afford to pay $1000/week out-of-pocket for therapy. Would a 299.0 diagnostic code (the code for autism) help her? You decide. Do I think it’s happening often? Probably not. Do I think it’s happening some? Absolutely.
Another facet to all of this is family members, specifically siblings and parents. This goes back to my feeling that Autism Spectrum Disorders are genetic. I know of a family where all three children are on the spectrum; another family I know has both parents and at least 1 child on the spectrum. Another possible increase for the stats is that once you have a child diagnosed with autism, you are (probably) much more likely to be aware of similar traits in your other children. I know of families where their toddler was diagnosed and then they start to realize that their “quirky” teenager or preteen has always exhibited signs and that child then ends up with a diagnosis. The same for younger siblings. If we hadn’t already been down the road with Simon, would we have been so quick to pick up on George’s delays? Granted, George hasn’t been diagnosed (yet), but his old pediatrician insisted there was nothing wrong with him. If I hadn’t already been down this road and also wasn’t such a strong bitch *ahem* advocate, would I have been so quick to get him into Early Intervention? Maybe, maybe not.
I also believe that teachers and child care providers are becoming more aware of what autism can look like and so they are helping parents to get their child evaluated when those parents may simply not have known that help exists.
I’ll be honest here: Had it not been for the on-line Due Date group I was in when Eleanor was born (and still am today), I would not have known Early Intervention existed. I probably would have just listened to Simon’s doctor at Kaiser when he said that everything was fine, and who knows how long it would have been before Simon had gotten help. The point there is that the more people who know about autism and are talking about autism, then the more people who will be getting help.
And another thing, one that I doubt is included in the new statistics, is the increase in ADULTS being diagnosed with ASD. This goes back to what I said earlier about once you have a child on the spectrum, it becomes easier to see those same traits in others. Well, it’s the same when you’re the parent of a child (or children) with autism. I know of several parents who have sought help and have been diagnosed after they learned their children are on the spectrum. If you talk to many autism families, you’ll find that it is quite common for them to be able to say “oh, yeah, my husband, my brother, my aunt, my cousin have autism”. Or even “My son just got diagnosed and I started to realize that I do a lot of the same things and, guess what?” Is that true for every family? No, of course not. But, it does seem to be not uncommon. And, again, I don’t think newly diagnosed adults were included in the new CDC numbers.
Which brings me to…. well, to me. In the year since Simon has been diagnosed, I’ve become more aware of some things that I do that could possibly, just possibly, indicate ASD (a stimming behavior, some sensory issues, anxiety and social normative problems, amongst other things). On-line DIY tests seem to agree, for what that’s worth. Am I going to pursue a formal diagnosis? I don’t know.
So, very teal deer (tl;dr) today, sorry. The short answer is that I think the sudden uptick in autism stats is due more to increased and better diagnosing, not necessarily because there is some unknown factor that is “causing” autism. Of course, I’m not a scientist, I’m just a mom, so I could be completely talking out of my ass here.
(On a side note: Simon’s vocabulary has jumped to around 12-15 consistently used verbal words, not counting his letters, numbers, or animal sounds. He’s doing great!)