Referred to the paediatrician twice and still no diagnosis.

[SilkClayFlowers]

My ds is 5 years old and since he started nursery (which is within the school) they have voiced many concerns leaning towards ASD. These were certainly not out of the blue as myself and my family had, had our own concerns too.

He’s been seen by the local SEN specialist paediatrician twice now and whilst she has remarked on him being an ‘unusual boy’ she said she cannot give an ASD diagnosis as she doesn’t see it.

It’s tricky as: he has always had great eye contact
No obvious sensory issues
No stimming
Has always been a good and varied eater and sleeps well
Is on track academically
Enjoys playing and has a developing imagination.

However: social skills are clearly lacking. He hasn’t formed any strong friendships but has regular play dates.
He is very quick to lose his temper and lashes out at school. (This has caused countless internal exclusions, where he is sent to another class).
He is literal and gullible
He does not listen and regularly does not answer especially to requests to do things.
Hé has boundless energy and will move contstantly. He’s at his happiest at a playground climbing and running.

He’s a total mystery and I’m wondering if any wise sn mums could shed any light.

many, many thanks

He sounds like my boy in many ways who has ASD but a more atypical presentation. I would insist on having the ADOS or ask to see a different paediatrician for a second opinion.

Thank you so much for responding. I know so many of the sn threads feel like a replay.

The school were very keen for him to be referred to a different paed at the time and she said she’d seek a second medical opinion if we came back.

Can I ask about your boy? How old is he and how is he getting on at school\socially?

We are very lucky to already have great provisions in place at school but without a diagnosis I still feel powerless to support him properly.

I believe the assessment his paediatrician has twice carried out was the ADOS but I’m still a bit woolly with the terminology. For the most resent one he happily chatted away to her whilst proffering pretend cups of tea and drawing pictures of his friends. Way to mask it boy!

Ds is 6 and it's all been a complete disaster as paed failed to pick up any signs of ASD that were pretty obvious from an early age. We also had some very questionable and inaccurate NHS assessments (pretty common here). I've learned not to trust NHS professionals plus the NHS tend not to diagnose at aged 5. Socially ds is struggling but school have been pretty awful to say the least. Pretend play aged 5 shouldn't rule out ASD - ds started doing this aged 3. Neither should drawing pictures of friends!!!! The ADOS is a multi disciplinary assessment (we haven't had it). It might be worth getting a private assessment if you can afford it. We saw Daphne Keen who is recommended on here but there are loads of other fab paeds.

My DD is autistic, coming up to 5 and can (and does) draw pictures of her friends, has friends, goes happily on play dates, does lots of pretend play, etc. She is also a good eater and sleeper and her stims don't stand out that much (to me at least! Muscle tensing particularly in legs, and jumping when excited). So I agree your description certainly wouldn't seem to rule out an ASC.

She has good eye contact with us but I'm told not with new people. She also often doesn't seem to be listening, doesn't respond brilliantly to name or instructions etc. so those were the bits that rang bells with me. Doesn't enjoy transitions (I guess nobody does, but they are very anxiety provoking for DD).

We saw 3 different Paeds when DD was between 3 and 5. All said they thought she was quirky, and the letters from school described autistic traits, but they all felt she would grow out of any concerns I had (or the Pre-school, and then school had) by the time she was 7.

She is now 8 and is still showing autistic traits and is still quirky. She is very academically able and needs no real support in school, but they have suggested we get a diagnosis before secondary, in case the proverbial hits the fan for her then.

I am considering private diagnosis at the moment, as when I went to the GP, he was reluctant to refer us for a 4th assessment even though the school sent a supporting letter, and DD found the appointment very upsetting because she did not understand why I thought there was something "wrong" with her - even though I handled it very sensitively and never said the word wrong - only different. She is quite sensitive to criticism so I do not think the diagnosis process will be a nice one! If only we had got it sorted when she was younger and took random appointments in her stride!

Or maybe I am just neurotic. I sometimes wonder.

The problem is that due to resource implications, waiting lists etc the NHS are becoming less and less willing to diagnose ASD at an early age. If you can afford to get a private assessment go for it.

Light tripper, your daughter sounds so similar to my son. He is unable to keep still, especially when concentrating which is a problem in a school environment. I wonder if we’ll oneday get a co diagnosis of ASD and ADHD.

Private assessment is not a possibility at the moment due to mat leave but something I’d consider when we’re back on our feet, financially.

I’m finding so helpful to here other parents stories of ‘aypically presenting’ ASD. It’s an absolute puzzle to get my head around and for so long I was all to ready to believe people saying that he was fine and just quirky.

I have a child with an ASD diagnosis who, as she gets older, is so clearly autistic. She sounds similar to your DS in presentation and when she was younger several people suggested ADHD. We had a really good sensory needs assessment done by a private Occupational Therapist which identified a myriad of sensory difficulties. Sensory processing is one of the four areas of difference that seem to be replacing the old triad of impairments that used to be talked about. It was the extreme rigidity of thought plus the sensory issues that convinced the paediatrician to diagnose despite her being borderline on the ADOS. It could be worth asking for an OT referral. School actually bought in the private one in our case as the local NHS OT department is rubbish, as noted in the Ofsted/CQC Local Area SEND inspection.