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Did anyone get an ASD around 2 years old for their child

(15 Posts)
Heytheredelilah1987 Sat 22-Oct-16 16:02:26

... and if so what we're their symptoms? I'm hearing people saying my son is very young at 22 months but we were urged to put him forward for a referral to see the paediatrician by a Consultant psychologist in the family (who has observed and assessed him) as she thinks it's highly likely he's autistic.

Thanks.

FrayedHem Sat 22-Oct-16 16:41:19

DS1 was dx at 3.2, it would have been sooner had it not been for the first community paediatrician we saw. It's not helpful for me to share that particular saga(!), but when the Speech Therapist persuaded me to try again (as the first paediatrician had since left), we were then immediately put back into the diagnosis pathway. We lost about 8 months so he would have been about 2.8ish.

I first raised concerns with the HV when he was 22 months, due to very little speech (and lost a few words), not responding to his name, terrible meltdowns that would last for ages over seemingly small things. There were probably other things but I can't remember them now! The HV referred us to SALT and the community paediatrician and we were seen by both within about 8 weeks I think

Waiting lists can be long and each area does things differently which can impact on the official age of diagnosis. When DS1 was dx the waiting list for an assessment was 12 weeks, 8 years on, it's now 7-8 months (waiting for one for DS3!). Do push forward with the referrals.

coffeemachine Sat 22-Oct-16 16:44:03

not DC (dx at 3) but I know children who got a dx on the NHS.

I think key to getting an early dx is to get a referral early. At 2 DC was non verbal, no understanding. repetitive behaviours, tantrums, delayed self help skills, just repetitive play (opening / closing doors etc). I knew she had Asd but I had to battle for another year to even get a referral.

In the support groups I attend, there are lots of mums who would not get a referral before 3 in favour of wait and see and therefore, the DC weren't seen by the right people.

Heytheredelilah1987 Sat 22-Oct-16 17:01:06

Thanks ladies.

Fraya I've had a referral for the paediatrician and now I'm going self refer for language therapy for him. I'm determined to help as much as I can.

Coffee I am wondering myself is 22 months is far too young for this sort of dx - however I've been strongly advised by family to do so. I hear early intervention is key? I'm just scared of labelling him.

coffeemachine Sat 22-Oct-16 17:38:13

hey, you mentioned Dd's name in your post. you can report to Mumsnet to get it changed.

don't think 22 month is too you. many countries diagnose earlier and we in the UK have to battle to get even a referral when others are already have received a dx. We had to attend a parenting course pre-DC which (surprise!) didn't cure Dd's autism. but all this nonsense just delays dx.

I found a dx came with no help at all. So don't expect dx = help. far from it. But it helped me to understand what we were dealing with.

we used DLA to fund therapy (Salt and Aba) as we got very little on the NHS.

have you considered applying for DLA? it's based on care needs, not formal dx (though having a dx helps sometimes)

Heytheredelilah1987 Sat 22-Oct-16 19:01:51

I haven't thought of that yet coffee as I don't know what care needs would be necessary? He will be applicable for free funding of nursery when he's 2 so I don't know what else I'd need the dla for?

Heytheredelilah1987 Sat 22-Oct-16 19:02:58

Sorry I was referring to Frayed Hem when I wrote "Freya" - typo! Damn auto correct.

coffeemachine Sat 22-Oct-16 19:14:21

DLA is care needs over and above a typical child. When a child is younger it can be harder to argue as also a NT 22 months old will need a lot of care and support.

have a look at the cerebra guide. it will give you some good pointers. there may be local help in completing the form (CAB, welfare rights officer at the council, other charities).

FrayedHem Sat 22-Oct-16 20:07:29

You don't need a dx for DLA but it can be helpful to have some kind of professional report (paediatrician/HV/SALT/nursery etc) as back-up to your claim. Whilst it isn't technically a requirement, it will probably make the process easier for you with a preschool aged DC.

DS1's dx did trigger some helpful things for us - mostly from the Paediatrician doing a Notification to Education which brought in the Ed Psych and Specialist Teaching Team. It's likely that those things could have been arranged before dx, but people have to know it exists to be requested in the first place and the preschool were lovely but not SEN experts. We were also given a place on an ASD parenting course after the dx, but tbh I didn't find it very helpful.

Also keep a log of who you spoke to and when, don't be afraid of chasing up referrals and getting email addresses makes keeping track a lot easier.

Heytheredelilah1987 Sat 22-Oct-16 20:08:02

Thanks coffee I'll have a look into this

typetytypetypes Sat 22-Oct-16 20:53:22

I think the stage of dx is something too. DS1 got his official dx (autism) at 3.2; I self-referred for SALT at 22 months and he was referred for neurodevelopment appointment at 2.3 by a paediatrician in audiology (hearing test was routine part of SALT referral) who thought it would be worthwhile. So glad that paediatrician was on the ball! But does mean from referral to diagnosis was 11 months.

DS1's 'flags' included:
- delayed communication (babbled but no real words, the few he had he used infrequently, didn't point, didn't indicate for help, not full eye contact, didn't share things that interested him)
- repetitive activities (could get 'stuck' on a toy or activity, had a routine he liked thought not strict, e.g. eating and sleeping around the same times each day otherwise would be very unsettled)
- delayed play skills (doesn't engage in imaginative play/role play, focused on cause and effect toys)
- delayed self care (not making any moves towards dressing, toileting)
- no sense of danger
- limited attention ability
- some sensory issues, e.g. unsettled by certain sounds, light/dark

There's probably more but these were always the ones being mentioned early on and we're judged in comparison to the average child his age.

We got DLA when he was 2.8, we hadn't considered it but paediatrician recommended and this was pre-dx. We got middle rate care and we honestly wouldn't have thought before we were eligible. The extra money has been helpful, because it has meant we can try more stuff for him, e.g. we've bought sensory toys, we've bought Makaton supports, stuff for PECS, and we have the back up if we want to go out for the day and worried about public transport (as sometimes DNA be overwhelming) so we have the cash for a taxi, we bought an annual ticket to a local museum he likes... it has been useful for all sorts that has benefitted him and his wellbeing and development, and enjoyment.

BUT, it is particularly useful for accessing other services. We've learned that DLA can be used as a bit of a blunt tool to access services, e.g. We're on a register for local leisure activities for children with SEN, we can access short breaks / respite if we want to because of it, and other things, as a result of having middle rate care DLA.

Overall we did, and still do, feel that he's alright - his main limitation in his communication ability, but he can go out and about, we do lots of stuff, everyone tells us how fun and friendly he is, so we've had to sort of train ourselves to see the issues. But it hasn't been a label, instead it has enabled us to get more support. We live in a good LA for SEN provision however.

In DS1's group there was a boy who was diagnosed at 2.5. DS2 is going through the initial stages (paed appointments, SALT) and is currently 22mo. We started this process around 12-18mo, being more aware of early signs following our experience with DS2. We have an appointment next month after which point I expect maybe one more, and then determining whether to refer for official diagnosis process. If that was the case and he was diagnosed, we would be potentially looking at official diagnosis at or before 2.5yo.

DS2 is different to DS1, some similar signs (e.g. no pointing, doesn't ask for help, communication delays etc), but has other things, like walking on tip toes, gets more stuck on activities than DS1 and also has shorter attention span (didn't think that was possible!), more 'needy' but play skills are a bit more advanced than DS1 at this stage, whereas eating is behind DS1 at this age.

Heytheredelilah1987 Sat 22-Oct-16 21:06:52

Thanks Frayed. I'll be sure to chase them! I've already been doing so since I handed a letter in to the docs (which has to be sent with her referral) So I'm on it in that respect haha!!

LegoLady95 Sun 23-Oct-16 18:55:20

My son was dx officially at 2.5 years old. He was first referred at 19 months. His behaviour was very 'classic autism' and was perhaps easy to diagnose - it seemed so clear to all of us. The paediatrician he saw on referral actually told me within 10 minutes of meeting him that he thought he was on he spectrum, this was before the age of 2.
He is 9 now and still very classic and very severe.

Bananasinpyjamas1 Sun 23-Oct-16 19:41:02

22 months isn't too young. I saw Nurse and GP about my son aged 24 months, but they fobbed me off and I lost a year, he was DX at 36 months. I wish I'd known, even if it saved so much of the 'is he, isn't he' for my own clarity.

Heytheredelilah1987 Sun 23-Oct-16 21:26:58

Thanks Leno and Bananas.

I'm pushing for a dx ... I know it's what my son needs. We all need to know either way so we can help him too.

It's looking likely it's autism.

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