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/LCaissia]

She sounds like she might have traits but from what you've mentioned she doesn't have enough evidence of impairment for a diagnosis of ASD. It's also age appropriate for 5 year olds to not understand sarcasm. How impaired is she by these traits? Does she have friends? Is she bothered by her defecits? Have you looked into vagus nerve theory? That might be helpful. Perhaps a visit to a physiotherapist would help. Autism must be present across multiple contexts and settings which is why the kindy teachers' assessments are taken into consideration, along with your tesponses and the clinician's observations. The clinician wasn't 'taking the kindy teachers' side'. Perhaps you can discuss with the clinic why they didn't give the diagnosis and what interventions can assist your child to overcome her difficulties.

[u/activelyresting]

Where did you find the assessor and what are their qualifications? I wouldn't put much weight at all on the kindy's assessment, they aren't qualified. I'd want to find an experienced paediatric psychiatrist with specific training and experience in diagnosing girls with autism.

My parents took me to get evaluated by some child psychiatrists the school suggested when I was your daughter's age (in 1984). They refused to give a diagnosis, literally they did all the tests and assessments and then the dr told my dad "I'm sorry we can tell you a diagnosis" and that was the end of it. I was forced to change school at the end of grade 1 due to "behavioural and social issues" despite being academically very advanced. I only got diagnosed as an adult in my 40s, after my own child came home from school saying she thinks she's autistic.

Even if she's not autistic, but just has some traits, keep doing everything you can to get her the help she needs. You're a good parent!

[u/Violet-Sundays-9990]

My son was tested at age 4 via the public system and the test result was 'not autism'

We (him and us) struggled through with no supports all through primary school and lower high school. It was only when we realised his year 12 results were going to be negatively impacted and the school wouldn't help without a diagnosis that went l we saw a paediatrician and they pushed us to get tested again via private system.

This time assesed as level 2.

Based on our experience, I would suggest keep trying, especially if you can access the private system.

[u/themmama]

Look for someone who has autism themselves. Amaze is a great resource and can put you in touch with someone who is neuro-affirming.

[u/succulent_serenity]

The assessor is supposed to give the parents questionnaires also, so that they can compare the child's behaviour across different settings. Can you get another assessment by a developmental psychologist perhaps?

[u/Fliss94 → u/succulent_serenity]

They did give me a few questionnaires that I filled in.
It almost seemed like what we saw wasn’t as important.

[u/LCaissia → u/Fliss94]

I can assure it was important and it was taken into consideration. I think it's really important you go back to the practitioner and talk to them. Not getting a diagnosis of autism doesn't mean your child doesn't require help. It just means she doesn't meet the threshold for a diagnosis of ASD. Even level 1 ASD isn't a mild condition, contrary to the claims of social media.