If you raised autism concerns at 2 year review, what happened?

[FloralDance]

Just that really. Particularly interested in the experiences of those who had verbally able children, and particularly girls.

My DD is having her 2 year health visitor review next week. I think there are lots of red flags for autism, which I'll obviously be talking to the health visitor about. I don't know what's likely to happen - will we be referred? Who to? Any and all experiences welcome. Thanks in advance.

I have a DS but in my experience nothing until he was in Reception despite us noting many signs and having an education background so vaguely familiar with some things.

Hi @FloralDance, hope you don't mind me jumping on your thread. My DD is also 2, and concerns have been raised by nursery. Her review hadn't been booked, but luckily I managed to get one sorted for next month. Do you mind me asking what your concerns are?

Absolutely fuck all. Referral had already gone through via speech and language as I kept calling them stressed out over his lack of talking and understanding, but they only referred him once he turned 2 (I rang the day after his second birthday after they told me this!). He did abysmally on all the scores for the 2 year check. HV said sympathetically "that must be tough" and basically just hung up. No support. We are now a year into a 2 year waiting list for the assessment.

I raised concerns at my son's 2 year review. He was observed, nothing conclusive, he walked and talked late, but he was referred on to the council's intergrated disability service. His health visitor observed him at home and at nursery, again nothing conclusive, but I just knew there was something so health visitor referred him on. He was assessed with an ADOS test by the council's Ed psych and speech therapist and diagnosed with autism just before his 4th birthday. I know we were very fortunate with this. He is my second child and I just knew from the age of one he was different.

Mines a boy and the answer is nothing apparently it was ‘just a phase’ -
It wasn’t until year 5 (age 9/10) that someone actually said ‘something isn’t right here’
hes got adhd and autism

I don’t fit some of your criteria (my concerns were for my son) but didn’t want to not comment.

Initial concerns raised at 2yo review. HV agreed and referred to SALT & paediatrician. SALT & paediatrician saw him and paediatrician referred for ASD assessment. Seen and diagnosed 21 months after first appointment with the paediatrician.
The team who diagnosed him did see him 4 times before his actual assessment; once at home and 3 times at nursery.

Go to gp for referral. First thing is to check hearing and has to be referred by them. Health visitor can send them a letter to support.

Can't say I'm feeling reassured by these responses!

@Covidwoes I have loads of concerns but some of the main ones are:

• pronoun reversal - has consistently been using 'you' and 'me' the wrong way around for at least six months (i.e. will say "you have had a poo in your nappy" when she means herself)

-echolalia, both immediate and delayed -toe walking

• giant meltdowns

-very sensory seeking behaviour, spins and flaps and throws herself around with no sense of danger

• not interested in other kids, not very interested in adults
• picky eating

and so many more! How about you?

Absolutely nothing. The HV cooed about how bright she is. Even though DD had a meltdown at a stranger appearing in the house, refused to speak to her once I finally managed to calm her down (did everything through me), made no eye contact with her, demonstrated her hyperlexia, I told her about the anxiety stopping her sleeping (yep even at 2), the social issues she was having and the family history of ASD.

An amazing GP picked it up (she was around 4) when we were so totally broken by lack of sleep we took her to see if there was anything we could do. He immediately noticed the lack of engagement with him, the anxiety of new situations and the fact that she was not only reading the medical poster on the wall she was reading it repetitively to calm herself down and suggested it before we could mention anything else.

Our 2 year reviews here are completed at 2 years 10 months. Because if compounded issues (and frequent cries for help from me!) We got a pediatrician referral. The initial assessment took another year to take place and they requested reports from nursery and the health visitor for the second appointment. Depending on the issues they may ask to hold off discharging or diagnosing until they are at school.

My experience is if the child copes at school by masking they don't care if they don't cope at home. If they behave at school like they do at home then they'll keep hold of them and do a more thorough assessment of the child.

The whole system is set up to get them through school and screw them as a person

Not a similar scenario but it took us two years to get diagnosis of autism and adhd for my daughter at age 15 (referral at 13). It takes a long time but is totally worthwhile. Getting it an early age is also an advantage.

I took Ds to the Gp around 2 with autism concerns. He was verbal but had a lot of signs of autism - hating loud noises, wouldn’t make eye contact, would scream blue murder if we took him anywhere busy (Costa or whatever, nursery groups were out etc). He was fascinated by road signs and flags but showed no interest in toys. Thankfully she took me seriously and referred us to the paediatrician. He was accepted onto the autism pathway for diagnosis and was fast tracked and was diagnosed aged 3.5 (this was in Norfolk). He is now 10 and has come on a long way since then, mainly because we got help early and applied for an ehcp ourselves straight away. He attends an autism specialist school and is thriving. (It hasn’t all been roses though - the first specialist school he went to was far too pushy and academic for him and he was very unhappy so we removed him for a year and home schooled and fought to secure a new place, which he loves).

DS failed his 2 year review on the speech and language and communication parts, we had already seen SALT at a drop in session so we're on their radar. DS had another review at 2.5 and the SALT requested a GP referral to Community Paediatrics, where were put on a waiting list for ASD assessment which took 3 years to get. No diagnosis received.

In the meantime we went private for speech therapy and had a supportive preschool (luck rather than judgement) which meant we got the support in place for school including an EHCP.

I have one boy(11) and one girl(6) diagnosed with autism. Both times I had my own thoughts that they were autistic but the nursery set it in motion with speech and language. They were both diagnosed at age 5(boy) and 4(girl). Took 2 years for my son to get diagnosed and 18 months for my daughter. Just keep on and on and on and on. Literally. If you know there's something there, do not be quiet about it because the quiet ones are put to the back of the line unfortunately. Good luck :)

We were referred to a specialist HV, who did a preliminary screening which showed significant concerns. We were then referred into the Early Years SEND team in our area, and from there SLT and OT, and we had support from all of them until the multidisciplinary team met for the ADOS and the subsequent diagnosis. It worked exactly as it should (it was still stressful).

Fobbed off every inch of the way until diagnosis when we went private.

@FloralDance I'm a teacher and I know how slow everything is, so I'm not getting my hopes up.

DD has just turned 2. Her speech was slow initially, but is really picking up now. However, she has never used the words 'mine', 'my' or referred to herself. She does respond to her name though, and says her name when we ask who she is by pointing her out in a photo.

She tiptoe walks, but not as much as she used to.

Nursery have mentioned hand flapping, but I haven't noticed this at home.

Lack of peer to peer interaction. Again, I haven't noticed this, as she interacts well with us and her older sister, but nursery have said she struggles interacting with her peers.

She has always played very well independently, but now I'm wondering if that's because she's happier that way. She does enjoy playing rough and tumble with her sister though.

Nursery have mentioned she doesn't like certain textures, but neither did my friend's NT son at this age. My NT niece also had lots of sensory sensitivities at this age too (and now doesn't at age 7), so it's hard to know!

Yes my dd who got an ASD diagnosis at just turned 7 (first attempt was age 4 then pandemic delayed the revisit after a year). I had concerns at 2 with her speech, she was way, way behind my elder dd, had word finding difficulty, pointing, very slow speech, repeating words, movie talk from 2 on.

The HV suggested SLT drop ins, they said their criteria for 2 are saying two words together. We referred to physio after both nurseries she went to reported her markedly physically slower than other kids at walking and running, she had an awkward gait. Again physio said if she can walk at 2-3 good enough.

At 3 I took her to SLT for assessment who noted her attention and listening off but verbal ability was average for her age so no concerns.

My sense is that a diagnosis under 5 is difficult and many people will fob you off including family and friends - I knew something was off when she was 2 but it took years to piece it altogether.

When my daughter was 4 we self referred to OT as she kept falling over and they were onto it and organised the first assessment - we real did that whilst she has DCD too, the accidents were sensory overload related.

It was pretty smooth sailing from 4 on, you know your child best.

Nothing, although mine is a boy. He was verbal albeit a bit behind (we were invited to a S&L drop in but the S&L therapist who saw him said they had no concerns, though I think they should have had some), loads of sensory issues, prone to meltdowns, didn’t point/wave… but he just didn’t quite tick enough boxes for HV to do much more than want to “wait and see”.

When he started nursery at 3 they flagged a few things and started keeping paperwork and doing little inventions but it was really only when he started school and his behaviour became harder for staff to handle that we got a referral to paediatrics. He was finally diagnosed with autism age six - I’d known since he was a baby there was “something” and by the time he was two I knew he was autistic. He’s thriving now though.

We'd raised concerns prior to the 2 year review about not making sounds. We had our 2y review at 2y3m "to give her chance to catch up" as the HV put it, then were referred to SALT as she was making sounds but had no words, poor eye contact and no gestures. She had an initial appointment with SALT at 2y6m and 6 sessions 6 months later.

SALT determined it was not a mechanical issue and referred on to paediatrics. She had an appointment with them at 3y9m, and was referred to the autism service. The autism service saw her for 2 assessment sessions plus reports from nursery and diagnosed her age 4y4m.

@FloralDance This is my job profession, and we would firstly offer support with your concerns to see if we could help/improve anything at all. Then after a few months would look at referring to a paediatrician however would need lots of evidence to support the referral. I.E nursery reports, observations and questionnaires, parents actively working alongside strategies given

They laughed at me and said she couldn't possibly be autistic because she could talk

She was then diagnosed at 14 following a horrific transfer to secondary school

My 10yo DD is just going through a referral for autism and has been masking for a long time, hence it hadn't been spotted until now.

Looking back though, the first clue was at her 2yr check when she aced every part of the assessment, until the health visitor got to the social questions.

The conversation went like this...

HV: Does she show empathy?
Me: No
HV: So if someone was upset, would she seem concerned?
Me: No
HV: Even if her sister was crying, would she try to comfort her
Me: No
HV: Well I'll put her down as 'average' for social skills because she's very good at everything else.

I can't believe I didn't question it at the time but I didn't know much about autism back then and I suppose I just trusted the health visitor. She was honestly trying to word the question in every way possible to try and get me to say yes.

My concerns at that stage were dismissed as a ‘lazy boy’ and they weren’t worried because he was progressing. Fast forward to reception and we’re now waiting for an ASD assessment - it’s pretty much a foregone conclusion at this point. I wish I’d been a bit firmer in pushing for a referral, but that said it wasn’t completely clear, a lot of his behaviour could be explained as just being a two year old, whereas now the differences are pronounced and it’s quite clearly ASD.