Just realized 12yo ds has ASD, now what?

amother

Sat, Feb 25 2023, 9:42 pm

My 12yo has always been my challenging child. The first time I brought him to the developmental pediatrician, I was told, "welcome to being a mother of boys!" and given resources for mother-to-month support groups... A few years later, I went back and was told, "seems like things changed" and he was diagnosed with ODD/ADHD. When we started medication for ADHD, his life changed - night and day.

All of a sudden, I'm putting two and two together and realizing I'm pretty sure it's undiagnosed ASD - very high functioning, nevertheless, his presentation would be caught by a talented diagnostician - I'm pretty sure.

Here's the thing: he's doing well in mainstream yeshiva at this point. He struggles when taken out of yeshiva for medical appointments and will not be happy to be subjected to autism testing.

I had a conversation with a close friend / therapist the other day who said that A) she def sees that this kid could be ASD and B) intervention can be extremely helpful before 11/12, but after that it's a lot tougher.

So what would I get out of subjecting him to this? He's already medicated for ADHD and there are no meds for ASD.

imasinger

Sat, Feb 25 2023, 9:55 pm

First step is get that diagnosis. You can speak to a good neuropsych or developmental ped about the best way to talk to him about the testing, and, if your hunch is correct, about the diagnosis.

The diagnostician will do a full battery of tests, and those will point out strengths and areas of concern.

Depending on what is an issue, you can then think about what could help.

flmommy

Sat, Feb 25 2023, 9:56 pm

Why not wait and do the testing in the summer if you are still concerned

amother

Daphne

Sat, Feb 25 2023, 9:58 pm

amother OP wrote:

I had a conversation with a close friend / therapist the other day who said that A) she def sees that this kid could be ASD and B) intervention can be extremely helpful before 11/12, but after that it's a lot tougher.

So what would I get out of subjecting him to this? He's already medicated for ADHD and there are no meds for ASD.

did she clarify about the 11/12 thing, curious what that means.

amother

Sat, Feb 25 2023, 10:15 pm

amother Daphne wrote:

did she clarify about the 11/12 thing, curious what that means.

She's a therapist. She told me that she worked with a 6yo who was diagnosed w/ASD and he's now 8 and in a totally different place... but there comes a point in a child's development... at around 11/12 at which point it's much harder and they're less receptive/adaptable when it comes to the therapies.

amother

Sat, Feb 25 2023, 10:17 pm

imasinger wrote:

I'm trying to figure out why and what will be gained. This child has medical trauma from something unrelated, so bringing him for testing is very difficult. I'm 99% sure the issue is ASD. He's had years of OT for sensory issues and some counseling.

What would an ASD diagnosis do for him at this stage of the game?

amother

Daphne

Sat, Feb 25 2023, 10:17 pm

interesting. my daughter hasn't been diagnosed but she does have certain challenges and was in therapy from around 6-8. but now we are taking a break so I was curious.

amother

Hibiscus

Sat, Feb 25 2023, 10:21 pm

If you're so inclined, you can look into homeopathy. Alan Freestone and grant Bentley are expert homeopaths who specialize in asd.

imasinger

Sat, Feb 25 2023, 10:24 pm

amother OP wrote:

Hugs, that's a lot already.

I have 2 kids who were diagnosed late, and they're having issues now as young adults. It's harder to get them the help they need without the track record.

It sounds like in your case, it might be wise to wait some more, and see if self confidence builds?

amother

Snowflake

Sat, Feb 25 2023, 10:28 pm

Other than having something to point to when your child struggles, it means very little. My son has been struggling since he was born in various ways. Some doctors put him on the spectrum, some don't. Doesn't really matter to us. We get him help in all areas.

Do you get your son help for his areas of weakness? Only a lowering functioning kid might have some ASD specific therapy like ABA.

amother

IndianRed

Sat, Feb 25 2023, 10:38 pm

Practically it helps to get services. Asd is a "very good" diagnosis for that bc everything is covered. It might also help you with strategies although you can always implement them without a diagnosis. If you won't do anything with the info though then yes there's no point chasing after it.

WhatFor

Sat, Feb 25 2023, 10:41 pm

For many neurodivergent kids, learning about their diagnosis is very helpful and validating (assuming they're not taught about it by someone who projects their own stigmas about it onto them). You can talk to a neuropsych and see what they think before actually giving the kid the test, but I wouldn't necessarily not bother with any treatment based on one therapist's opinion. Even if treatment when younger is most effective, that doesn't mean treatment when older is entirely useless. I assume your child could still learn skills at age 12, but better to go to a specialist in this area and ask.

amother

Brown

Sat, Feb 25 2023, 10:49 pm

I got my ASD diagnosis as an adult. It helped me a lot with understanding and accepting myself. And it was also really helpful in finding a therapist who is a good fit for me.

WhatFor

Sat, Feb 25 2023, 10:54 pm

Just to elaborate on my first point, it can be helpful and validating for many reasons, but a big reason is that they'll often experience people in their life (parent/teacher/peers/siblings ) who ascribe some moral failing to their inappropriate behavior. Like "if you only tried harder, you wouldn't have done xyz." Or "if you really wanted to behave, you wouldn't have called out in class."

Kids internalize and believe this, but at the same time, they lack the physical capability and skills to spontaneously improve in problem areas.
So they keep "messing up" and then wind up with terrible self esteem because they can start to believe that they're actually just bad for continuing to make these mistakes. This can also cause tremendous anxiety (or exacerbate already existing anxiety if their neurodivergence bestowed them with this lovely condition), because they never know what they're going to do that's going to cause everyone to be super upset at them.

Having a diagnosis helps them to understand that it's not something they did wrong, that there are ways to improve on it, and they aren't inherently bad. People worry about their kid feeling different, but believe me, they already know they're different and getting into more trouble than the "good" kids. This can literally help them feel better, and even less alone when they learn about all the other people, successful in life, who struggled with this. (Obviously, it's possible for a kid to feel bad about a diagnosis if everyone in their life acts like it's the plague, or dismisses it, or says things like it's not real and it needs to be kept a secret, etc. But based on your proactive approach to all this, it doesn't seem like it would be an issue in your case.)

STMommy

Sat, Feb 25 2023, 11:08 pm

11/12 is the exact age an ASD child becomes more aware of peers and how he/she is different....a very good age to know what the reason for that might be.

amother

Olive

Sun, Feb 26 2023, 5:13 am

amother OP wrote:

So until now I thought DH had hijacked my account and written your post. (He didn't.)
Our DS didn't have years of OT for sensory issues, though if I'd known more he would have had them.

I will tell you why we are interested in pursuing a diagnosis, despite the already medicated ADHD and ODD.

Where we live an ASD diagnosis opens doors for unlimited OT/ ST/ PT (we don't need PT BH) and hydrotherapy and lots of other therapies either free or very very subsidized, until age 18. It also allows us to apply for a 100% child disability stipend which would improve our lives greatly because we'd have a cushion plus one of us could work less hours each month. It also allows a card to cut lines (I'm sure you know why this is useful with an ASD child), and various discounts, plus enlarges the basket of in-school services our child can receive.

So that's why we would pursue the diagnosis. I'm not entirely sure the ASD wasn't caused/ triggered by the unrelated medical trauma, since a lot of the symptoms appeared afterwards, but really it doesn't matter, what we are looking at matches ASD (specifically Asperger's) perfectly and our whole family has suffered for years from these issues. There are also specific targeted parenting classes for those with ASD children, and support programs for the siblings.

I don't know if where you live an ASD diagnosis would add anything to your lives or your child's life, and if it doesn't perhaps it's not worth it, but for us it would open many doors and possibilities, benefiting both the child and the rest of the family.

For instance, our 12yo has asked for ST but because he "aged out" of the early childhood resources (available until age 9) there isn't too much we can do other than pay privately, and we don't have the funds for that. A diagnosis would change that. He also asked for OT when he heard us discussing a sibling and my regrets for not pushing for OT when he was younger (I didn't know what to look for back then), but the same issue for ST goes for OT. A diagnosis would allow him to receive both, unlimited, without breaking the bank. He might be a preteen now but better late than never, and having another 6 years to work with therapists is huge and may allow him to close some gaps.

I suggest looking into resources available where you live and seeing if there is anything beneficial which can be had with a diagnosis. If not, maybe it's not worth it, but if it unlocks doors then I say absolutely go for it.

LovesHashem

Sun, Feb 26 2023, 6:34 am

Olive I assume you are in Israel by reading your post. I reccomend you get a diagnosis and apply for Bituach Leumi as soon as possible. Every year it gets harder and harder to apply. Get as much documentation of his history as possible needing therapies and help.

Your best bet is to not even mention ADHD, and push the ASD diagnosis. I have the number of someone who helps with the proccess, feel free to pm me if you want it.

Also having Bituach Leumi will be so beneficial for your child after 18 for them to have a small financial cushion if they struggle figuring out what to study, or working full time etc

amother

Brass

Sun, Feb 26 2023, 7:21 am

OP, My 12 year old 'normal' son is also diagnosed with ASD. I too have just boys and was told I need to better my parenting skills until he recieved the diagnosis.
You're welcome to reach out to me for support.
Btdt.hug@gmail.com

LovesHashem

Sun, Feb 26 2023, 8:25 am

Also bituach leumi stopped accepting private neurophsyc evals and there's a long list for the ones through the kupa so it's best to start the process asap

amother

Tangerine

Sun, Feb 26 2023, 8:42 am

amother Olive wrote:

A couple of comments here:

First, it's clear you're in Israel. Only Meuchedet stop services at age 9, in other kupot you get hitpatchut hayeled until an older age. Look into changing kupot cholim

Second, even when you're entitled to services, you'll have to invest a lot of time to get them. Start the process as soon as possible because it is extremely time consuming. You shouldn't have to get anyone involved to get bituach leumi but since asd has become a diagnostic buzzword the last few years, they're making it harder and harder to get qualified. Speak to Chaim vechessed about the best way to go about it.

Sibling support groups are aimed at children with siblings who are clearly disabled. I have not found any support groups for siblings of higher functioning children. LMK if you have found something.

If your child is high functioning, they likely won't want you flashing their disability card around.