Struggling to get a diagnosis

(13 Posts)
WhatYouTalkinBout Mon 21-Dec-20 23:08:20

Sorry this might be long. DS9 has been showing signs of ASD since he was small and it was picked up by his teacher in reception who herself has an autistic child.

He had his first paediatrician app to get the ball rolling 3 years ago, in September someone from Target Autism finally came to the school to assess him and on Saturday he had his ADOS. The results did not score high enough and I was basically told he doesn’t have autism or ADHD, that he’s too smart (wtf) and that he could make some eye contact. I left speechless as I was convinced he would finally get his diagnosis and have some doors open up for him in terms of support.

This is my son:
-Sensory issues - doesn’t like sock seams, I have to cut labels off all his clothes
- Doesn’t like loud noises or people close to him and wears ear defenders as school and home
- talks excessively
- struggles to keep eye contact and looks all around the room whilst talking to you
- he goes straight from being ok to angry In 0-10 and will throw things
- doesn’t sleep and can’t switch off until gone 11pm
- makes loud repetitive noises
- bites and scratches himself

The school are fantastic and he has his own desk so he doesn’t have to sit close to anyone, has a safe space outside he can run away to when things get too much for him and has “interventions” throughout the school day which gets him out of class such as cooking, gardening.

Has anyone been in this situation where their child has been told they aren’t autistic when every other professional that has seen them are convinced they are? sad

The paediatrician said they will be referring us to CAMHS but we are already in contact with them through the school and they havnt been much help at all.

OP’s posts: |
Imiss2019 Mon 21-Dec-20 23:14:44

Outside of his sensory issues (which seem his biggest concern) what are his difficulties with social interaction and communication? (Other than lack of eye contact?)
I would consider an assessment with an OT with sensory integration experience.

WhatYouTalkinBout Mon 21-Dec-20 23:14:56

I should add that he’s also had involvement from a educational psychologist and specialist support services

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WhatYouTalkinBout Mon 21-Dec-20 23:16:07

Thanks for replying, he has friends but doesn’t understand boundaries or personal space

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WhatYouTalkinBout Tue 22-Dec-20 10:29:11


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danni0509 Tue 22-Dec-20 13:00:09

The making eye contact thing really annoys me when they make that a deciding factor, my 7 year old ds is really affected by autism has been since he was about a year old but he makes perfect eye contact, I’m not autistic and find eye contact incredibly uncomfortable! The other thing that makes me laugh is when they say autistic people prefer to be alone and they are unsociable etc next joke! Ds is the complete opposite, he won’t leave people alone. It’s not all textbook, in many ways ds is classic autism but then in many ways he’s not!

The professionals don’t know everything, they might have the qualifications but they don’t have the experience and its the experience that gives you more understanding! Sometimes I get irritated by some of the professionals at ds appointments as they talk utter shit grin

Your son definitely has something going on, so for them to leave you with no answers is v frustrating.

What did the EP and specialist support service recommend?

Does he have any melatonin to help him settle down before bed? Do you have a regular paediatrician you could phone and ask them to prescribe this?

I totally agree with the sensory thing, can you do a sensory diet yourself in the meantime? My ds is VERY sensory and we do all sorts with him.

What things do you do with him at home? Can try give you some ideas on things you may be missing x

WhatYouTalkinBout Tue 22-Dec-20 13:39:06

That’s how I felt at the ADOS app that they were talking shit, they saw him for just 45 mins in a room playing nicely with their toys! He had no reason to get upset or show his true colours and said to me himself after that the activities and puzzles they gave him were basic and easy.

The EP basically agreed with everything the school had in place already for him and nothing really ever came from it as they do their absolute best to support him and keep him happy at school. Specialist support service came in weekly for an hour session where she helped him talk about his emotions and feelings and he enjoyed that.

We don’t have a regular paediatrician, only the first one who saw in 3 years ago and the one at the ADOS app. We have tried to get him melatonin but were told too many children are prescribed it and they wanted us to go through sleep solutions first. Although we have tried everything, no screen, board games, reading. Last resort will be sourcing it online sad

I will look into sensory diet thank you!

I also have a ds6 and ds3 and it’s exhausting day to day trying to keep everyone happy

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Imiss2019 Tue 22-Dec-20 14:06:17

I recommend the book Understanding Your Child’s Sensory Signals. Lots of activity specific advice for different sensory responses

Niffler75 Wed 23-Dec-20 12:47:01

@WhatYouTalkinBout I'm sorry. Being 'smart' and being able to make eye contact in my understanding should never be a reason not to give an autism diagnosis.
Sounds like you are getting brill support from the school.
Take a look at the NICE guidance on diagnosing autism. I am sure in there it mentions about eye contact.
Maybe contact one of the autism charities after Christmas for some advice.
You are entitled to a second opinion.
Does he have an EHCP?

Amandapanda1 Tue 23-Feb-21 21:28:18

Sounds the same as my ds
He is 8, nearly 9 he does all these things plus chews. And he literally climbs the walls at home.
School are in the process of assessing him
I filled forms in before Christmas
God knows how long it will take

lorisparkle Tue 23-Feb-21 21:43:52

It sounds very frustrating for you. When ds1 was observed in school by an advisory teacher she said he was 'fine' but that was because in a structured, routine environment when he understood the expectations he does appear 'fine'.

We were lucky to have a great paediatrician and she recommended the 3Di assessment. Mainly because ds1 is 'borderline'.

The assessment was incredibly valuable. It is mainly based on in-depth interviews with the parents but supported by a questionnaire from the school. It gives specific scores for key aspects and then has a score when the result is significant.

Ds1 scored just above the cut off point for two aspects and just below for the other two.

I wonder if this assessment would be far more beneficial for your son.

For sensory issues have you seen an occupational therapist. In my opinion they can often be amazing.

PaedsOT Wed 24-Feb-21 14:14:13

Sorry to hear it’s all so difficult @WhatYouTalkinBout. I’ve been a children’s Occupational Therapist (OT) specialising in education for the last 10 years. From what you’ve outlined, it sounds like gathering as much information about your son as possible would help you to best meet his needs, irrespective of a diagnosis. There are many contributing factors that could be underpinning his functional difficulties - ASD is just one possibility.

Porcupineintherough Wed 24-Feb-21 16:55:43

Yes and no. Ds2 has a lot of asd traits. When he was younger we did wonder if he'd meet the diagnostic criteria for autism but now he's a teen I think it would be true to say that he's not so much on the spectrum as sitting on the edge with his feet in the water. That said, he's very similar in many ways to BiL who got his diagnosis at 44 so maybe we have called it wrong.

What made the difference to us was a diagnosis of grand motor stereotypy which explained a lot of the visible behaviours and age - he literally grew more similar to his nt peers rather than diverging from them. If that's not the case with your ds then yes keep pushing for a diagnosis.

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