We all know there is benefit to early intervention services – but it’s important to understand how an early diagnosis affects you and your child. In particular, the benefits of an early diagnosis of Autism Spectrum Disorder. If you have a co-parent who’s resistant to accepting an ASD diagnosis, send them this post!
I post about this topic because a reader reached out to me recently asking my opinion about some social media posts she had read about touting a new cure found for Autism Spectrum Disorder by a couple in Sweden. The post claimed their 2 year old was diagnosed and then “cured” of ASD. I’m not a pediatric neuropsych, but I don’t really think I need to be to address this so long as it was an isolated claim. My opinion (you don’t have to agree with my lens, that’s okay! Please let me know your thoughts in the comments!) is this: I think what probably happened is that their child’s needs profile was consistent with an ASD diagnosis, and eventually [after various therapy, time passing, growth spurts, et al], it turned out that the original diagnosis was incorrect.
I would also guess their child is still working on some of the challenges/delays that prompted the ASD diagnosis and that all “symptoms” did not fully go POUF-byebye. This is strictly from a mom’s personal experience (but one who’s been to that rodeo)…and my takeaway here is that the ASD diagnosis may very likely have been the driver of the change in ASD diagnosis…which is why I argue take the diagnosis early if it’s given! Here’s my train of thought:
Can an ASD Diagnosis be Incorrect or Change?
When we’re prompted to bring a toddler or young child in for evaluation, it’s usually because of missed milestones or delays, challenges in communications, dysregulation, balance, speech, or we’re worried about something that seems off (whatever that means…our gut says check on this….or we need help…we see something, our kid is struggling, whatever it is). We cannot get a 2 year old a full proper neuropsych test, they are simply too young to complete one fully. For some children, it can be very difficult to parse all the underlying causes of a child’s challenges even well into early elementary years. So an ASD diagnosis in the early years is really preliminary. Many doctors don’t even like to officially diagnose it until later.
Ultimately, we’re “profiling” (but not in the bad way lol…) ie we’re looking for patterns. For example, a child with ASD and another child with a cocktail of challenges such as (but not limited to) ADHD, SPD, OCD, APD, Dyslexia, Apraxia, etc. can have very similar behavioral and milestone profiles at young ages – essentially a kid is struggling with the same stuff and they need the many of the same services. We’ll see kids who need help with social interactions, speech articulation, staying on task, hyperactivity or proprioceptive sensory seeking, reading delays, behavior challenges, impulse control, following directions, and more. Toss in possible hearing and vision impairment (often not yet thoroughly tested at young ages and can be difficult to asses beyond basic assessment), inaccurate/inconsistent parent reporting (not that you meant to, but sometimes its hard to really know what you’re even looking for or at, it’s easy to not realize your child is or isn’t doing a behavior!!) and add a dose of anxiety or split parenting styles at play and you can imagine how it could be difficult to pinpoint what underlies every single part of children’s behaviors.
For some kids, only after a re-eval at an older age could one make a final determination. So yes, this 100% happens that a 2-year old ASD diagnosis could change. I suspect the child who’s parents think (s)he was “cured” were much more likely to have been misdiagnosed (or to have been too early for a clear diagnosis) than to have found a cure.
Now all this said…let’s talk about WHY that early ASD diagnosis changed. It’s really important, because even when it’s wrong I will argue you’re better off to get it!! Or maybe even fight for it! (don’t tell the insurance company I said that!) – and THIS is the piece that no one wants to say out loud. Therapists and teachers won’t tell you this, but I’m going to say it because I sure wish someone had told me.
Benefits of Early ASD Diagnosis (Even When it’s Wrong)
An ASD diagnosis [most importantly] serves to kick in services a child needs. Essentially the same or similar set of services – speech, ot, behavioral support, classroom aids, etc – but a child with an ASD diagnosis will receive a far more robust and intensive service program than a child with a combination of the latter individual diagnosis (even all stacked together) would receive. I mean a huge difference in services. HUGE (depends a little on where you live, but in most places its a big diff!). And we’re talking services covered by insurance and school districts.
The truth is, not much is provided by school districts or insurance without an ASD diagnosis. If you want to help your child get the most services the fastest, then the pathway to that is an ASD diagnosis. Now, if you can afford to privately pay in cash for all these services, that’s another option – but even those who have insurance coverage for these are really capped and limited. It’s the difference between 3 1-hour private speech therapy sessions per week versus 1 30 minute group speech therapy session per week – that’s a HUGE difference. And the progress a kid can make with the former is SIGNIFICANT.
Not many “lucky” (okay lucky may not be the right words here) parents get this service benefit delta explained to them – but the ones that do can and will often push for the ASD diagnosis so that they can get max services for their kid. Another example of the socioeconomic advantage of wealthy parents. But anyone can do this. Trust me when I tell you, I live in Los Angeles, and rich people are getting the ASD diagnosis and the robust services for their kids – opting not to is stepping on your own kid’s toes.
Speaking from personal experience, I resisted it because it sounded scary (to me, an adult) and no one told me I’d get way more services! I worried about “this will go down on your permanent record” which doesn’t exist (really – this is a made up thing our parents told us when we were kids!). I thought it was better to wait until later when it would be more accurate because in all honesty, I wasn’t quite ready to digest it and I thought pushing it off might make it go away. With hindsight, I could gotten much more help when my son needed it most. But I didn’t know.
For the record, my child is not ASD. The ASD diagnosis was discussed as a possibility early in our adventure because he regressed at age 1 year in his speech – we started with Regional Center around 15 months and it was unclear initially. He needed ABA and I also resisted that initially because of it’s tie to ASD. He’s now diagnosed ADHD + SPD + APD but he was reeeeeeeally speech delayed. At 11 months he was saying nana (banana) and night-night and then had a massive seizure. Then he was silent. He stayed silent until about 15-16 months and then started all over with the babble of a 4 month old. Even at 2.5 years old he was only using single syllable sounds to indicate things to us, he could not say complete words. The list of needs and challenges fit with ASD in many ways around ages 15-24 months. Now we know things we didn’t know back then (after YEARS of intensive speech, ABA, ed therapy, resources hours, OT, IEPs, private pay services AND tens of thousands of our dollars!). I digress.
I also have a good friend who’s twins were diagnosed ASD at age 2. They embraced it, and had intensive ABA, speech, and OT for many years, as well as 1-on-1 shadows in preschool…and when they got to Kinder they were told by the school district that the district did not agree with the ASD diagnosis. She was stunned. Shocked. She couldn’t believe it, and had them privately reevaluated. The neuropsych confirmed…the diagnosis was ADHD and SPD. Her kids still have some sensory and OT stuff (as does my son, and which we jointly affectionately refer to as “wonky sensory stuff” lol) they continue to work on, but they were both misdiagnosed. Suffice to say, they benefited tremendously from the services that the ASD diagnosis afforded them. They would have received 1/10th of the services with an ADHD and SPD diagnosis. That’s right, literally less than a tenth of what they got. ASD not looking so bad…
And what’s the worst case? They did have ASD? And they got a jump start on all those services? No downside to that. Literally, none.
I think most psychologists diagnosing a 2 year old with ASD will usually tell you they need to be reassessed when they are older. Some won’t even diagnose that young. IMO, the early diagnosis is important though so that families can get more robust early intervention services…so it’s better to aggressively diagnose than be too conservative (my opinion only, certainly debatable!) because in the end we’re all just seeking help, support and therapies to address a child’s needs profile, right? I say call it anything you want just get my kid the help he needs at max levels, you know. If it changes later, awesome. If it doesn’t then my kid got the best help I could get for him. There’s no loser there?!?!
Your kid is your kid, and their challenges and areas where they need help don’t change regardless of what you call it. You can embrace an ASD diagnosis and get them tons of help, or you can resist it and give them no help or not enough – neither of these names change your actual child, or their actual challenges – only the help that is given to them.
Please drop your thoughts in the comments! If you have a link to the story/claim of the couple who shared this story, please send to me I’d love to see it as I’ve obviously made some assumptions here to try to answer this question! And hey, I hope I’m wrong and they found it!
Bottom line, don’t resist the diagnosis. xoxo.
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