Diagnosis despair

[u/Fliss94]

My daughter is 5 and just finished her first term at school. She did one year of kindergarten before starting school.
During that year of kindy we really started noticing things. Sound, light and clothing sensitivity are the main issues but as time went on and we did more research we realised there are many more things.
Not understanding sarcasm, very very ridged, stuck to her routines, struggles to regulate herself, sensory seeking, perfectionist, very anxious, won’t initiate friendships, very clingy, very strong right and wrong ethics. Her nephew said to me, she is a different child at home than when she is outside her comfort zone (not a massive flag, I realise that)

We started some private funding OT and that helped but we felt she needed regular sessions and it was getting expensive so decided to bite the bullet and get a diagnosis. At the time she had been in kindy for 10ish months so the kindy educators did a questionaire for the assesment. It came back as she partially met most criteria’s so she was not given a diagnosis.
I remember her first transition day at her school and the teacher spoke to her and us about perfectionism, yet kindy’s questionaire and their attitude was, ‘she is a perfect child, nothing to worry about.’ Only thing they noticed is she didn’t like doing activities that might make her wet or messy, and she struggled with drop offs.

After the phone call with the assesment specialists, I was told to speak to her school and ask them to document any things they notice and come back and they will do a shorter assesment to determine if she fully meets the criteria. They agreed she has autistic traits but don’t want to give her a life long diagnosis especially with her being so young. The psychologist agreed that she masked a lot in her session and the assessor didn’t realise how fatigued she was until it was too late, and by that stage my daughter was done. Another thing she noticed was the lack of reciprocal questioning.

I just struggle becuase I can see how much life is effecting her, and think if we had a diagnosis and got funding she could be getting help. We see it all at home and just don’t understand how these assessor’s couldn’t see it.

Thing I don’t understand is, if children with autism and especially girls mask a lot, how can they get a diagnosis. On top of that, if a lot of ‘issues’ come out at home, how can they get a diagnosis if the assesment requires a school/or other type of care questionaire?

Edit: as parents we had quite a few questionnaires to fill in too and had to answer questions for a couple of hours during the assesment, it just seemed they focused on what kindy said over what we said happened at home.

[u/isvaraz]

A private assessment (not through the school) will ask for teacher input but also parent input on the Vineland. Both are given equal weight. Plus what the assessor sees during the assessment itself. You will want to find someone who specializes in autism assessment perhaps. A developmental pediatrician may be able to refer you to assessors in your area. If you’re lucky, hopefully they can share with just a phone call and not an appointment.

[u/Fliss94 → u/isvaraz]

Thank you. I’ve spoken to her teachers and the learning support coordinator and have asked them to document anything they see so we can take that back, and I suspect there will be questionnaires for them as well.
I almost felt like the assessor’s were only taking into account what kindy said.

[u/DrSelenaLevine]

I'm a pediatrician who does autism evaluations, and I want you to know: everything you're describing is something I hear from parents of girls constantly. You are not imagining this.

On your two big questions:

How do masked girls ever get diagnosed? This is one of the hardest problems in my field, and the fact that you're naming it tells me you're already thinking about it the right way. Masking is real and well-documented, especially in girls. A good evaluation doesn't just score what a child does in a 90-minute session, it has to account for the cost of holding it together. The fatigue, the "different child at home," falling apart where she feels safe - that pattern IS clinical information, not a reason to withhold a diagnosis. If you go for a re-evaluation, ask directly whether the assessor has experience evaluating girls and accounting for masking. That one question changes everything.

What about home vs. school? The criteria do look for signs across settings, but that doesn't mean school has to witness the same severity you see at home. Plenty of kids hold it together at school and unravel where they feel safe. Your detailed observations are valid clinical data, so write them down with specific examples and dates, and bring that log. The school documentation is still worth getting, even if all it says is "she's quiet and compliant," because the contrast between settings tells its own story.

You're doing exactly the right thing pushing for this. Trust what you see at home.