Pros and cons of getting my kid assessed?

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Should I get my kid diagnosed if she's autistic?
Yes 25%  25%  [ 1 ]
No 25%  25%  [ 1 ]
More complicated answer 50%  50%  [ 2 ]
Total votes : 4

Ettina
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17 Aug 2023, 10:57 am

I'm autistic, and a single mom to a 15 month old who might be starting to show signs of being autistic as well. She is verbal (actually precociously so, she's said 61 different words and occasionally uses short sentences) and doesn't have any really serious delays. But she's hyperfocusing, stimming a little, and doesn't understand pointing. I understand that it's early to tell, and my current plan is to just wait and see how she's developing. But let's say I do that, and by the time she's 18-24 months, she's showing more signs of being potentially on the autism spectrum. If that happens, should I try to get her officially diagnosed, or not?

I'm autistic, a psych major in university and very knowledgeable about autism, so I'm completely confident in my ability to help an autistic kid develop to their full potential. I'm also planning to homeschool her, so I'm not going to be worried about getting school accommodations until either university age or if she really wants to go to high school or something. And I know from personal experience that the autism services in my area suck, and I wouldn't trust them to treat my kid, so if she does get diagnosed I'll probably refuse any referral to therapy and just work with her myself anyway. And if I think she's autistic I'll let her know that once she's old enough to understand, regardless of whether it's an official diagnosis or not. My dad's self-diagnosed, so she'll have a role model for that as well.

Given that, is there any point in getting her diagnosed? Specifically, is it worth getting a diagnosis in early childhood, when she's not able to weigh in on whether or not she wants one? What benefits would it have for a parent who's already knowledgeable about autism and not planning to trust their kid to services that require a diagnosis?



timf
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17 Aug 2023, 2:48 pm

The only advantage I see for a diagnosis is if one is required to get needed services.



swrider
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17 Aug 2023, 3:04 pm

I'm getting my his diagnosed because I want an outside opinion on how I can beat help them.

The only issue I can see with your plants approach is that doing everything yourself might make them that much more dependent on you and make it harder to interact with the rest of the world. Insurance on sameness and extreme attached to you may be worsened. Now I am not sure that requires an outside diagnosis, but it may be helpful for both them and you to have outside perspective and interactions.

I'll say this for sure though. No therapist psychologist etc... Will care about them as much as you do.



MagicMeerkat
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21 Aug 2023, 10:29 am

I knew LOTS of people who adamantly REFUSED to get their child diagnosed with anything because they didn't want them "labeled". They got labeled anyway. Labeled as "weird' "strange" "odd" "disruptive" "rude" "arrogant" and grew up getting bullied, abused and eventually arrested. The ones that had a diagnosis, they got the help they needed and grew up to graduate, go to university, get jobs, get married, have children, etc. Life in general was just easier for them if they had a diagnosis and people knew what they were dealing with.


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MatchboxVagabond
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21 Aug 2023, 10:40 am

I do think this is a little more complicated than a simple yes or no. And it is worth noting that even with a diagnosis, there's no legal requirement to disclose it to anybody. Just because there is a diagnosis doesn't mean that it needs to be disclosed to school officials if there aren't problems that warrant it. I personally that I could have done a lot for myself if I just had accurate information about myself. It would have given the bullying a much different view and I could have made other decisions with regard to studying.

That being said, I'm a big believer that if there's suspected autism, that it needs to be evaluated at some point before you hit your mid-20s. The reason being that there's no guarantee that you won't wind up like I did, burned out with no viable diagnosis that really covers it. Had I been properly evaluated, even in my teens, the hold up about when exactly this started would have been easier to clean up. Unfortunately, in my case, just because of when the DSMs IV and 5 came out, I was pretty much screwed regardless. At that time there wasn't even any research done on masking, so I wound up with a bunch of diagnoses for psychotic disorders, somatization disorder and anxiety, and treated with most of the medications that are used to treat autistic people.

There's also the issue that even if somebody is fine, having the people being left off the rolls makes it harder to justify changes that might help everybody else.

MagicMeerkat wrote:
I knew LOTS of people who adamantly REFUSED to get their child diagnosed with anything because they didn't want them "labeled". They got labeled anyway. Labeled as "weird' "strange" "odd" "disruptive" "rude" "arrogant" and grew up getting bullied, abused and eventually arrested. The ones that had a diagnosis, they got the help they needed and grew up to graduate, go to university, get jobs, get married, have children, etc. Life in general was just easier for them if they had a diagnosis and people knew what they were dealing with.

Yes, I wish I would have had the opportunity to get a proper evaluation when I was young enough to not have so much trauma interfering with the diagnosis. As much as I love my life and have done many cool things, much of that was in spite of all this baggage and even things like just keeping a steady job required so much of my energy that looking for a better one was too much.

OTOH, a diagnosis also would have prevented me from moving overseas, so there's that.



magz
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21 Aug 2023, 11:03 am

15 months is really young. What services would be available after a diagnosis?

10 hours of ABA a day is not a good thing for a toddler, no matter what the providers advertise. Generally, ABA is bad for many* autistics because of its goal of making a child "indistinguishable from their peers", which, decades later, makes a person behaving correctly and empty inside.

My approach is, get an official diagnosis when you see you would benefit from the support provided after it. My older daughter got diagnosed in second grade, specifically to provide her with some particular adaptations at school, like partially individual classes. I knew she was autistic since I learned that I was, but earlier she was lucky to have sufficient support without a diagnosis.

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* generally, ABA seems to do good to autistics requiring higher levels of support, when it's employed to teach them basic life skills instead of trying to "cure" their autism.


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MatchboxVagabond
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21 Aug 2023, 11:43 am

magz wrote:
15 months is really young. What services would be available after a diagnosis?

10 hours of ABA a day is not a good thing for a toddler, no matter what the providers advertise. Generally, ABA is bad for many* autistics because of its goal of making a child "indistinguishable from their peers", which, decades later, makes a person behaving correctly and empty inside.

My approach is, get an official diagnosis when you see you would benefit from the support provided after it. My older daughter got diagnosed in second grade, specifically to provide her with some particular adaptations at school, like partially individual classes. I knew she was autistic since I learned that I was, but earlier she was lucky to have sufficient support without a diagnosis.

_________
* generally, ABA seems to do good to autistics requiring higher levels of support, when it's employed to teach them basic life skills instead of trying to "cure" their autism.

As an educator, the problem with ABA is in how it's used and what it's used for. I'd say that it's got more to do with the amount of thinking that's involved in the task. So, ABA for learning to use a communications device or toileting is probably not going to cause any real problems. ABA for complex social skills is going to cause all sorts of damage. It's the sort of thing that automatically happens while out and about, not exactly worth paying for abuse.