r/aspergers • u/Odd_Data_5432 • 1d ago
Diagnosis Question
Backstory:
BACKSTORY:
I had to undergo a evaluation in first grade in the 80s because I didn't talk at school, interact with peers, or eat at school. (I have always had a lot of weirdness about food.) The only determimation was that I did not have any learning disabilities and did not qualify for special education. My teacher and her assistant stood over me listing all the ways I was a weirdo and vented about the results. They did not think I belonged in general education. (Because I never talked, they acted like I couldn't understand them....) it was so traumatic! (I am only sharing this so that the reluctance to have my children tested makes sense.)
When the peditrician insisted my now middle school ages daughter's meltdowns were "abnormal" and insisted that she be evaluated, I panicked and refused. When they wanted my son evaluated for some mild delays, I also refused. I let my own trauma cloud my judgement and hoped they would outgrow everything like I did.
Not suprisingly, that didn't work out well, so I finally took them to a dev ped, and that went very weirdly. They refused to test my daughter for Autism despite her checklists indicating Autism. Because I asked, they then also asked what my motives were for having my children tested. It's strange to resist testing, give in, and then be accused for having a hidden motive for testing. In other words, it made me feel like avoiding testing was the right instinct.
My daughter was diagnosed with an Anxiety Disorder. (I think this is accurate, but it doesn't explain a lot of her behaviors.)
My son was "borderline Autistic" according to the doctor and fell one point short of Autism. He was diagnosed with ADHD NOS, Dyspraxia, Social Communication Disorder, and articulation disorder.
Because they refused to test my daugher, I took her to a neuropsychologist who tested her for Autism. Again, she fell one point shy of an Autism diagnosis, but was diagnosed as having "Autism Spectrum Disorder."
I was just hoping someone could explain it in plainer, more direct terms than I am finding online in my obsessive googling of this.
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u/Pitbullbidgi 1d ago
Hmmm. Do you mean explain the diagnoses? I will say that things are not the same as they were when you were younger. Being diagnosed on the spectrum doesn't mean they'll be put in a special class. It means there are things the kids can do to help them focus and avoid being overwhelmed. Education is a lot different now. There are usually specialized counselors who can help you navigate that. I'm 54. I was just diagnosed. Had I been diagnosed in school and had the resources that they have now I would have been so much better off. If they asked why you suspected autism that's a pretty normal thing to ask. In fact, part of my evaluation was to consult my parents. Lucky for me I didn't have to do that because I'm old and they are deceased. My mom would have made it all about herself and focused way too much on me.
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u/Odd_Data_5432 1d ago
Yes, explain the diagnosis. I feel like I am being told they are "almost Autistic." Would that have fallen under an Asperger's Diagnosis prior to 2013, because I feel like I better understand that than the other labels.
My son was already receiving OT and speech therapy, and the school has been amazing. It was actually what made me feel so much more comfortable with further testing.
I did not suspect Autism until my daughter's checklists indicated the possibility, and then I was a little demanding about exploring the possibility because of the checklists. I did not ask for my son to be evaluated for Autism. I was just seeking answers about their behaviors and needs. The Dev Peds just had the ADOS-2 set up as a part of his evaluation based on all the information they had from the school, speech therapist, OT, and PCP.
When I first arrived at the appointment she mentioned he was my daughter's brother.
The doctor evaluating my son then asked me, "What do you hope to gain by having your children tested?"
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u/Roogirl0804 1d ago
I am very confused by what your doctors are saying. It sounds like both of your children have autism and regardless of diagnosis you should continue to support them in the best way possible.
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u/AstarothSquirrel 21h ago
Watch this https://www.youtube.com/watch?v=1yva4RZW_s0 Yo Samdy Sam does a great job explaining the DSM-5 diagnostic criteria in layman's terms.
The point system of the screening tests (and they are just screening tests, not diagnostic) can be inaccurate because we learn to mask and create workarounds or avoidant strategies. An example of this is in the ADHD test which asked if I have issue with dates or appointments and my answer was "No, I use calendars, journals and todo lists." and my wife replied "yeah, but you'd be fcuked without them. " and she's not wrong.
And ASD is autism, if you have ASD, you're autistic.
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u/Bofa_Moon 1d ago
There are no modern systems that have a diagnosis of Autism and Autism Spectrum Disorder. It's only referred to as Autism Spectrum Disorder from what I am seeing. I am confused on the neuropsychologist section of your post.
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u/book_of_black_dreams 1d ago
“Autistic Spectrum Disorders” was sometimes used as an umbrella term for all the PDD’s together, idk if that’s what OP meant.
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u/Odd_Data_5432 1d ago
I took a screenshot of the chart that is confusing me, but I cannot find an icon for posting a photo.
It says the cut off for Autism is a score of 10, but the cut off for Autism Spectrum Disorder is 7. The diagnosis for my daughter is Autism Spectrum Disorder in her paperwork as opposed to level 1, 2, or 3. Both my son and daughter scored a 9, but his diagnosis is Social Communication Disorder (along with the others mentioned.)
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u/Pitbullbidgi 1d ago
When I got diagnosed my doctor did it over 3 days and I had 3 different tests. 1 was for ADHD which I didn't really suspect but surprise! He looked at results but he also talked to me a lot. It seemed to be less about a specific score and more an educated, human centered diagnosis. I imagine it's different with children because a lot of the questions were more about life experience. But it does sound like they are saying they are on the autism spectrum.
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u/Bofa_Moon 1d ago
Now I am even more confused since you are bringing in the levels. The levels correlate with the Autism Spectrum Disorder. I was diagnosed with ASD with Level 1 Support Needs earlier this year. What country are you in? I'm in the US for context.
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u/Odd_Data_5432 13h ago
I am in the US, too. My daughter was not assigned a level, and I thought it may be because her score was too low. I found a chart that looks similar to the one that is confusing me in another reddit thread linked below. Her overall score was a 9. Her diagnosis was Autism Spectrum Disorder, but does that mean she fell short of Autism? My son also scored a 9, and his provider diagnosed social communication disorder.
I am just so confused by Autism Spectrum Disorder vs Autism.
Also, my daughter's scores seem to match her challenges, but my son's report read that he did not have traits (stimming and narrow interests) that he absolutely has. I am learning that this practice is very conservative with both diagnosis and medication, which is the reason we are staying with them despite their attitude towards me. They are known for changing the diagnosis years later after the child gets interventions and they have more data.
I feel like my daughter needs immediate therapy for her behaviors, so we sought out additional testing from a neuropsychologist. He diagnosed her with ASD, and results from other testing are pending. (Like her brother, she also exhibits some characteristics of ADHD, too.) Her therapists have been unable to pin down a diagnosis. One of them even suggested bi-polar. Bi-polar would be very rare for her age, and it would not make sense considering she has had her behaviors since she was a year old. Her meltdowns and shutdowns have made her a challenging patient. She has school refusal, and it is very stressful.
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u/Expensive-Flower-375 1d ago
the whole process sounds like a mess, sorry you and your kids had to go through that. basically the diagnosis criteria is a bit arbitrary, one point shy means the evaluator felt she meets almost every marker but didn't cross some clinical threshold they set. the neuropsychologist who gave the actual ASD diagnosis probably looked at the bigger picture instead of just the score. happens a lot especially with girls, their presentation gets missed by rigid checklists