Benefits of ASD dx for middle schooler?

[Anonymous]

TL;dr: Are there benefits for testing for ASD in middle schooler who is already plugged into services (OT/therapy), is happy socially, excels in school, and has good self confidence (is not looking for a name for why her social skills lag)?

I have a 13 yo dd who likely has ADHD-inattentive (per the Vanderbilt forms we had her teacher fill out and we filled out in 5th grade). She also some other issues like anxiety, sensory sensitivities, fear of change, social deficits. She is straight A student in honors classes, big feeler but baseline happy, has friends but for the most part only sees one friend outside of school. She generally gets good marks on work habits, interactions with adults, and interactions with peers but in earlier grades we got occasional reports of messiness and blurting out answers.

To give a sense of her strengths and challenges: She is introverted and imaginative (big reader and also writes fan fiction but only ever gets 1/4 of the way through a story lol) and is happy with how much she socializes. She does an individual type team sport (think something like swim team) and some clubs at school (choir, math, etc) that also involve outside-of school events and field trips that are more social, so she mostly socializes through those activities. She recently was invited to a birthday party at Six Flags by some more "popular" (but nice) girls - she had a good time, but then you see in the photos, the girls have their arms around each other and she is kind of to the side. She goes to traditional sleepaway camp, but the first one didn't work out because all activities were with her cabin group. Camp #2 has been successful because it is less structured and she can spend a lot of her time with girls who are a year or two younger (that's kind of where her maturity is). She has zero interest in clothing (beyond whether it is comfortable), texting, makeup, other common interests among girls her age- she had to ask me what Tik Tok was last year. I am happy about that as a parent but also get that it is developmentally appropriate to want to fit in with your peers, which she lags on.

Anyway: We met with a psychiatrist for 30 mins last week to ask about next steps since I want to be prepared going into HS and dd has expressed increased anxiety about the future and also braces. Dr. sent us new Vanderbilt forms to give to her teachers and referred her for autism testing. (I did mention that I would not be surprised if she had autism.) I asked about a neuropsych referral and they said they wanted something more autism specific but said it would be similar to a neuropsych. I just got off the phone with the testing provider, and they said it would just be an autism diagnostic exam. I will have to bring her in next week for a 3-4 hr pre screening - walk-in only, so they said to set the day aside - and then after that we can schedule an appointment with a diagnostician in July. This seems like a big undertaking of time and I'm not sure if it's the best use of our time, especially if we won't get clarification about ADHD or anxiety. This would also mean I would have to cancel a vacation day I've scheduled for the last day of school since I am running out of PTO - the kids will be bummed that I can't see their end of year performances and then go for our traditional ice cream celebration together. (Obviously I will not put ice cream ahead of my kid's medical needs - but I wonder if this is a "need." I already take so much time off for her therapy, for my youngest's speech therapy, for vet visits for our lemon of a rescue dog, plus all the regular kid stuff - I feel like I'm drowning at work)

To my question: What might be the benefit of an asd diagnosis? She is not the kind of kid who would feel better to have a name for her social struggles. We signed her up for a PEERS group when she was in 6th grade, but it was all 7th and 8th grade boys and she asked to quit, which she did with the school counselor's blessing. They have not put together a girls' PEERS group but will let us know if they do. DD also sees a therapist every week (recently moved to every other week) and that has been helpful. For example, she now is more comfortable asking teachers for clarification on an assignment, she is staying organized with her work, and has initiated some social plans with friends. I also have reached out to an OT provider because she has expressed that she is struggling with fidgeting too much (and social consequences) and being bothered by clothes. So I wonder what an asd dx could provide separate from these things, and I don't want to take resources from families with children with higher support needs.

Should I just try to get on the list for a neurospych eval instead (understanding that the waitlist where we are is about 12-15 months)? Or do I just take her to the autism testing next week?

[Anonymous]

I wonder if your kid is perhaps masking a bit more than you think and some of those things you mention do actually bother her more than she says they do or she feels she’s “different” than the other girls, maybe doesn’t get some of their jokes, etc?
Yes, it was really helpful for our kid. I didn’t think mine would find the diagnosis helpful, but I was 100% wrong! They were able to better understand themselves and felt a lot more comfortable at school and in social situations. Teachers noticed a positive change as well post-diagnosis (happier, more confident, etc).
Not sure which places you called, but we were able to get a neuropsych eval within 4 months. There’s no way I’d do it as a walk-in appointment and then have to go back again in several months. The neuropsych eval was 2 days of testing + a 2 hour virtual appointment with just the parents prior to the eval.
HS will want an official eval stating the exact needs if you think she will require any services (extended time for tests, taking exams in quiet/distraction free space, require teachers to explicitly state instructions or provide additional clarifications when needed, etc). Honestly, I wish we had done it sooner.

[Anonymous]

Anonymous wrote:I wonder if your kid is perhaps masking a bit more than you think and some of those things you mention do actually bother her more than she says they do or she feels she’s “different” than the other girls, maybe doesn’t get some of their jokes, etc?
Yes, it was really helpful for our kid. I didn’t think mine would find the diagnosis helpful, but I was 100% wrong! They were able to better understand themselves and felt a lot more comfortable at school and in social situations. Teachers noticed a positive change as well post-diagnosis (happier, more confident, etc).
Not sure which places you called, but we were able to get a neuropsych eval within 4 months. There’s no way I’d do it as a walk-in appointment and then have to go back again in several months. The neuropsych eval was 2 days of testing + a 2 hour virtual appointment with just the parents prior to the eval.
HS will want an official eval stating the exact needs if you think she will require any services (extended time for tests, taking exams in quiet/distraction free space, require teachers to explicitly state instructions or provide additional clarifications when needed, etc). Honestly, I wish we had done it sooner.

Agree. We didn't amend the 504 plan much when asd was added to my middle school dd's ADHD diagnosis, but the self knowledge has been powerful. Also keep in mind that ADHD and ASD can kind of mask each other in some ways. It's been helpful to learn from people with both. I like one YouTuber named yo sammedy sam who has some videos on the ADHD + ASD combo in girls.

[Anonymous]

PS a typical neuropsych exam may not be able to diagnose ASD. Might need both that and an ADOS.

[Anonymous]

I’d ask the neuropsych testing place in advance if it includes ASD testing in addition to everything else.

[Anonymous]

OP here. TY all for the insight. DD does not get any 504 accommodations currently. She is one who races through tests so extra time has not come up. What kind of accommodations do you have in place? I think that accommodations surrounding instructions/clarification could be so useful for longer term projects.

To address some comments-

DD definitely feels "different" and know that she has a hard time understanding other kids' references.

Thank you for the label of ADOS- that must be what it is.

We are in a midwest college town, and our health insurance is through our university employer, so we will have to go through the university for a neuropsych. It will take awhile!

[Anonymous]

I have an 11 yo DD who has ADHD, anxiety, has done OT for sensory issues, and possibly has ASD. DD is repeating neuropsych testing this year but I am not seeking an ASD evaluation.

DD has some friends and long term friendships, but no really close/best friend. She is young for her age in terms of interests - still likes play grounds, not interested in social media, etc. I don’t think she would know what instagram or TikTok are. DD also mostly interested in clothes that are comfortable and not what is in style. DD too my very well academically and has extracurricular interests.

My view is this - either she has ASD or she doesn’t, and time will make it more clear. We are already doing /have done all the theories recommended (seeing a therapy, medication for anxiety and ADHD, social skills group class, OT, etc). Her therapist told us that no new therapies would be recommended with an ASD diagnosis, that we are already working on all DD’s symptoms.

I am not in denial about DD’s challenges, and I am really uncertain about the value of an ASD diagnosis when she is (at least right now) not significantly impaired by the symptoms she is showing. If she has ASD, I assume the gap will grow, and then a diagnosis might help DD better understand how she is perceiving the world differently than others.

I would like to put out that I was also slow to mature, shy, and awkward with my peers until my early 20s. It all sort of finally came together for me then - close friends, dating, shopping, pop culture, etc. Some of us really are late-bloomers.