On or off the spectrum? Musings

amother

Thu, Mar 28 2024, 7:42 am

Hi,
I have two sweet young girls who received an asd diagnosis. We are in Brooklyn.
I don’t truly believe that they are on the spectrum.
Are there other mothers like me out there?

You can call it denial but I wouldn’t. I really don’t think they have it. I hate when it comes up, and it only does in regards to programs or therapies they participate in. They’ve never been spoken to about this and don’t have a label and I don’t want them to.
They are regular girls in regular schools.

I’m not milking the system or trying to milk the system ch”v. Both girls got evaluated from teacher/principal recommendations and huge push/demands from the schools due to difficult behavior.

It is clear to me that they process things a little uniquely, think things through in unique ways. They are not bad, or necessarily so different, they are bright and social. They are young, both under 10. One got diagnosis in 1st grade, other in nursery.

I guess I just wanted to discuss with other mothers because the “professionals” therapists etc always refer to their challenges as because on the spectrum, etc., and I’m wondering if they think I’m just dumb to not accept that.
I really truly don’t think they are on the spectrum.

My 3rd grader is powerful, like she has a lot of charisma and friends and is bright k”h, she sometimes has black and white thinking and emotional regulation ie tantrums can be hard. Respecting authority is a tough one, and regular school consequences don’t seem to affect her.
The younger 3 year old is cute and a little funny like she says things out of context/incorrect word usage and has zero safety awareness, aggression with kids if upset.
I guess just thought to discuss thanks for your positive words and insights

amother

Babyblue

Thu, Mar 28 2024, 8:24 am

amother Blonde wrote:

Hard to say. But many times autism mimicks adhd, particularly in young children. Low frustration tolerance and tantrums can easily be adhd instead. If they are doing well, no need to think of the diagnosis. Take whatever services you can get and don't share that information if you don't feel like it.

I was going to say this, exactly.
There are different types of ADHD (the inattentive ADD type comes to mind). Some of what you write is similar to my DD, who has the inattentive ADD. She's in high school and is comfortable with her diagnosis, she doesn't hide it. When she tells her friends she has ADHD they think she's joking, and she has even been told it's not "nice" of her to claim she has ADHD when she so clearly doesn't (guess her teen classmates know better than her doctor.)
I think the different nuances of ADHD are not always so well-known.

amother

Grape

Thu, Mar 28 2024, 12:22 pm

amother White wrote:

My daughter is 3 and was diagnosed with ASD. I spoke to a psychologist she said that my daughter has ADHD. It's very easy to misdiagnose. My daughter has big behavioral issues, but she is the most adorable social butterfly ever.

Masters in special Ed here and work in EI. Autism is a spectrum. So yes, someone can be on the spectrum AND be social. She is also still very little. You might see social things present more as she gets older or you might not. I have taught children with ASD both boys and girls and all of them presented differently but they were still all on the Autism spectrum. You can also have adhd and asd. They are finding more and more the two go hand in hand. With all due respect, a Stam psychologist is not qualified to diagnose something after speaking with a parent once.

amother

Bisque

Thu, Mar 28 2024, 12:24 pm

I’m with ya OP. I have lots of musings on the whole mass diagnosing.
Let’s start at the root where I feel is kinda shaky. The Bible used for diagnosing is the DSM which is an evolving piece of work based upon the collective understanding of human beings. The DSM is the same piece of work that has switched LGBTQ from an illness to a way of life …. Norms based upon human beings understandings.
So at the root I have questions
What is the purpose of diagnosing ?
1. Insurance purposes - to get services that you wouldn’t normally be able to get . I hear that, so essentially it isn’t a tool that empowers the child but rather a means to get them services which they need even if they don’t have that diagnosis
2. So that the support staff can better attend to the needs of the child . I am curious about this … the entire school structure would benefit from education geared for “neurodivergent “ kids . Go to AI, type in the behaviors you see your child exhibiting and get recommendations. Everyone benefits from clear instructions, structured lessons , calm environment etc. no need to dish out 5k to get recs you can get for free
3. Some pple say it empowers the kid , instead of viewing themselves as different they now have a name for their difference . I am curious about that as well. EVERYONE is different and have different quirks , and I can give one title for all of them - we are all unique human beings with different temperaments . I am not weird because I have blonde hair and most of my class has brown hair . And is it empowering ? Why can’t we look at each whole person as a whole person without the diagnostic labels ?
4. I have a child with medium to lower functioning autism - I didn’t need a genius to tell me that- I saw that she is different , but when I see perfectly highly functioning kids or even adults that are perhaps rigid or black and white thinkers and now they joined the autism community- I think it is a disservice and unfair to those that are not functional .

Shouldn’t we be dealing with kids based upon the behaviors we see and work accordingly . If a kid is a black and white thinker , let’s teach them shades of grey. If a kid is disregulated - let’s teach them to regulate.
The field is evolving and pretty soon we will all be able to get a diagnosis for something or the other because the entire spectrum of the human experience is becoming pathologized . Is this even helpful ?

amother

Grape

Thu, Mar 28 2024, 12:27 pm

We often think of Autism as the non verbal child stemming their hands in the back of the room. ASD today has become a wide range spectrum of neurodiversity. They are now finding that many children have both adhd and asd (and they both may become a part of the same spectrum one day). High functioning ASD can present exactly as you said, especially in girls. It also makes sense that both your girls have it because there is a huge genetic component. I do believe that many parents find out their own neurodiversity after getting their children diagnosed. I have worked with kids on the spectrum and have my own high functioning ASD kid. Don't worry about the label so much, getting them the help they need and the best tactics to parent them is truly the only thing you need to worry about it. They are both really little and there's no need to stress about the labels. I think it's great that you that you got a diagnosis and can now get the help they need!

amother

Grape

Thu, Mar 28 2024, 12:31 pm

amother Bisque wrote:

Ummm, trust me high functioning asd kids are hardly a walk in the park and many mainstream yeshivas want nothing to do with them but they are too HF for special ed schools. Also pretty sure the Torah doesn't refer to gay people as a mental illness 🙄

amother

Grape

Thu, Mar 28 2024, 12:50 pm

amother Trillium wrote:

Diagnostic criteria have expanded a lot. Which means that kids that need some services can now get way more easily, even if they are very different from the kids who got diagnosed when we were kids.

As someone who works in the field, when we were growing up HF ASD was hardly diagnosed. It was like okay the kid is a bit "off" and difficult etc...

Today, we understand the nuances much more and can spot HFASD much more easily, but usually only as they get to school. Under 3 it's still very hard to get a diagnosis unless you have the classic signs of ASD. I just think people don't understand what ASD means today. It is a huge spectrum.

amother

Cantaloupe

Thu, Mar 28 2024, 1:10 pm

As long as psych diagnoses will be based on the dsm and not any kind of lab work, they will always be somewhat arbitrary. It's a matter of do they check enough boxes. Does a psychiatrist or neuropsychologusy really "know" if someone has asd vs adhd vs ODD? They're not looking at brain imaging or testing neurotransmitter levels. It's a good guess at best, with some motive assumption thrown in for good measure. The diagnosis doesn't tell you anything new, it just repackages what you're already seeing.

Personally, I'm not so into psych labels. I like to look at symptoms and behaviors and figure out their biological root causes.

All that being said, I'm surprised that someone with loads of charisma, very sociable, lots of friends got an asd diagnosis. I get that hfasd females present differently. I know ppl like that up close. I get that they aren't always stark loners and can be quite extroverted. But I wouldn't call them charismatic, and they don't usually have loads of friends.

amother

Thu, Mar 28 2024, 7:13 pm

Thank you all for so many heartwarming and understanding responses.

To the poster who mentioned genetic, these aren’t our only children k”h and the other kids in the family don’t present like this.

I think it resonates a lot what some of you mentioned that diagnoses are given out more freely today, spectrum is wider, and especially in NYC services are available so it’s more commonly seen.

I guess it’s just uncomfortable for me to sit with -does my kid have or not have this diagnosis? For real, meaning on paper she does. And I was wondering if others feel that way and I’m glad I asked.

I still remember when my kid years ago was evaluated for OT as a 3 year old and I was told that she could use help cutting with scissors and I thought to myself can’t all 3 year olds use help in that area? Aren’t there areas where most of humankind would benefit from OT, I know I probably would lol, at least stretching and becoming more flexible. I’m not doubting therapy fields, I do think people are quick to give services today.

Anyways it’s so interesting to read peoples experiences and insights here, thanks! Have a lichtige shabbos Smile