Daughter did not receive diagnosis for ASD - re-evaluate?

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To re-evaluate or not for ASD? My 9yo daughter is doing so well as to be "subclinical" for ASD based on outside observation. But it's said that early intervention is important, so perhaps we go for a second opinion. Now? or later? What are your experiences or thoughts?

BACKGROUND

I am 95% certain my 9yo daughter has ASD (as do I, her grandmother and her cousin). However, my daughter received separate diagnoses for sensory, motor, speech, executive function and social difficulties, and not ASD. I have given her support since birth - helping her process and respond to social interactions as well as I am able. Apparently now she is too nice and interactive to qualify for ASD. My concern is that may be all good and well today, but when the pressure is on (e.g. girls' social demands at age 12), or her awareness expands - it won't be.

Her playmate was diagnosed with ASD (he "misbehaves") and now his parents get financial aid, while we are on our own --- a "too nice" ASD mom, with a "too nice" likely-ASD daughter. I can only offer her so much support as I have limits myself. She and I can only "logic" ourselves through so much. So do I just go with the OT being offered and keep providing all the support myself (visual aids, social scripts, setting expectations, etc. to the best of my ability) or go for evaluation again?

I can't wait for when ASD is evaluated by some objective measurement and not subjective outside observations. I was also sub-clinical on the ADOS-2, but my evaluator looked past my ability to compensate outwardly. Frankly it makes me sad: I was an unidentified twice exceptional child left to fend for herself (and have the scars to prove it), and now another generation... Just because we are outwardly "well behaved" (not always ).

How frustrating!

The scenario sounds familiar.
My son was given a heap of testing at age 11 when he was having difficulties at school. The psychologist decided he was gifted but with a specific learning disorder in writing and some anxiety issues. She stressed the giftedness and glossed over the anxiety, saying the two were connected. She seemed to be saying, as long as we kept his brain occupied, he'd be fine!
This never made any sense to me, it seemed like they'd completely missed all his issues, and hadn't found an explanation for his difficulties at school. When I brought up autism I was told he made good eye contact, so they didn't take that further. This was before my own diagnosis, when I knew nothing about autism, so I didn't know enough to query it.

Well, eventually, when he was 17 years old, I got him to a different psychologist who specialised in autism, who tested him again and did things properly by sending out the questionnaires to me and his teacher. This resulted in autism spectrum diagnosis. By then, I'd got my own diagnosis and learnt a lot more about autism, so was much more confident about it.

In hindsight, I really wish I'd either pushed harder on the first psychologist, or got him to the autism specialist earlier. Seventeen was too late to get him the help he needed towards transitioning out of school. Now at 19 he is having all kinds of problems with self-esteem, anxiety, and basically being unable to adjust to adult life. I feel like he would have done better with earlier help.

To me, your situation sounds very similar - an 'expert' who chooses to selectively pick conditions to match each quirk - rather than have the balls give the diagnosis which underlies all the issues. Why are they unwilling to diagnose? Lack of experience in the Asperger-type presentation? Ditto presentation in females? Unwillingness to "label" a child? Pressures related to autism resource availability? Maybe a mix of all of these.

So yeah, I feel your frustration.
Sometimes it's more damaging getting incomplete diagnoses like this, as it fools carers and teachers into thinking they understand the child's issues when they don't, and it delays getting the right diagnosis.

Having another crack at getting a diagnosis might be the way to go, if that's feasible.
Waiting a year or two probably won't hurt, but don't leave it as long as I did.
By age 13 I expect she'll probably be needing it.

Mrs. Peel, thank you very much for your thoughtful reply. I really needed it.

I am sorry that your son is struggling right now. I hope he can find the resources to get through this especially rough patch sooner than later.

Hey, World of Specialists: so much for preventative treatment, eh? Wait until crisis. I emailed something of that nature to my evaluator's case worker.

I am worried about my AS niece, a HS sophomore, who is currently excelling and has not received ASD support. Through HS I appeared to have it "together" -just "lazy" in certain areas, right? - until I fell apart -in a big way. Thankfully I found sufficient resources to clumsily make my way - by the hair on my chinny chinny chin; hope it's even just a little easier for our littles. They have our support.

All of your points make sense. My ASD therapist also mentioned "pressures related to autism resource availability" that an insurance company can penalize an institution that makes "too many" diagnoses. They knew I was autistic and I noticed that although I provided a five-page written document, I was probably not the best person for on-demand information: "her problems with routines? We don't have any routines" (unable to think on the spot). Ah, well.

I am lucky that my daughter's current public school is fantastic and teachers often identify individual challenges and make accommodations as part of their day-to-day excellence. The school counselor is open to working with her based on the diagnosis she did receive. Now middle school --- I'll need to do something before then or at the onset. Yes, I have a year or two.

I think I'll "chill" on this for a bit, get through some other burning issues (mine, pandemic related).

Thanks again. Wishing you and yours well.

I'm still angry about this. Nearly beside myself. I went for a 2nd opinion, but the person wouldn't even look at the evaluation since it not include the ADOS test (b/c of COVID it used BOSA).

Why do "well behaved" ASD kids get skipped? I'm so sad watching my daughter struggle every day: anxiety with perfection, expectations (routine), being touched, near smothering her pet (she calls is a support animal, not me). And then she falls into hysterics or lashes out (verbally or physically). And I feel a bit like a failure that I couldn't get this across to the dr, or is it that they are dense? And of course it's my life all over: you're fine, you're amazing --- BUT IT'S SO EFFING HARD!! !!

I can see that in my daughter --- in martial arts she's at the ready, going to kick higher than anyone, stronger than anyone and her instructor asks her to be at ease - and of course she can't. He repeats: Just be at ease. And she puts her arms down stiffly to her sides, but she's still on the balls of her feet, ready to jump, ready to move. Hyper focused on the task. She's been doing this activity for over a year. She knows the name of 1 classmate (b/c he gets called on a lot). So sweet, so painful.

If you think it will help, you should go for it.

The importance of early intervention is overblown. I suspect as a way of marketing autism treatments - get parents to rush into intensive therapy before they've adjusted to the diagnosis and learned how to help their child themselves.

The studies that have found a difference in outcomes based on age at starting intervention generally compared toddlers with schoolchildren - you need around 4-5 years difference in age to see an effect.

There's also the question of whether the intervention is actually helping or harming. Outcome studies generally focus more on how normal they seem than on how happy and functional they are, and very few studies have followed up into adulthood. Meanwhile, anecdotally, many autistic adults who had early intervention, especially if they got ABA, put on a good show as children and everything fell apart in their twenties.

At your daughter's age and functioning level, the most likely treatment offered would be social skills training. Personally, I'm doubtful about how beneficial such training is - I'm pretty sure if I'd gotten social skills training, I'd still have been bullied, but I might have been more likely to blame myself for the bullying. Honestly I feel like educating classmates is a better approach for improving inclusion of autistic children. If the playmate you mentioned goes to school with her, you might be able to get his parents involved, and improve things for both of them at once.

"On-time" intervention would be nice and relative to the individual. I've suspected my daughter's neurodiversity since she was a baby, but we've managed ourselves so far. I'm definitely seeing her anxiety ratchet up now at age 9 (why I sought help) and am concerned it will take another step up by 12 as demands increase. (The 20s were super rough for me also.)


OMGosh yes. DIB - diversity, inclusion, belonging. Her teacher does a bit: asks classmates to include my daughter, but I am not sure the belonging part is there (sympathy vs empathy) or else wouldn't by daughter seek them out more? My daughter reports that she is glad to spend some time with her classmates, but ultimately uncomfortable.


Thank you for the suggestion. That particular playmate goes to a different school, but I'll consider how the concept might apply with a current neurodiverse (ADHD) playmate, or in the future.