Severe language delay and I suspect ASD for my nearly 3 yo, what to do?

[HiawathaDidntBotherTooMuch]

DS2 is nearly 3yo. He has no words at all, not even mama. The only consonants he can say are b, d and w, and he can say all vowels. But he doesn't say any words. We have been having weekly SLT privately for three months. (We had been waiting for none months for the NHS therapy following my initial self referral.) He hasn't made progress in his language, but as far as pre language skills go, he has better concentration and eye contact. Private SLT thinks he has verbal dyspraxia and possible social communication disorder.

He was seen by a community paed for a developmental check in December. The result was that there was indeed a speech and language delay, and slight delays in other areas, but no diagnosis, just said to come back in six months.

He is having his first NHS SLT this week. We have only just been assigned a HV, who is coming next week. Portage is coming next week too, in advance of him possibly starting pre school in April.

I firmly believe that he has ASD. There are countless reasons why.

What else should I be doing for him, and how should I be pushing? I feel that we have been abandoned.

Hi,
I'm afraid I can't be very helpful as I'm still in the stages of awaiting follow up paed appointment & soon to start salt with my 26 month old who shows some signs of asd, but it sounds like you're doing all you can. If you're in touch with paediatrician, salt, portage, a new HV & due to start preschool, there must be the help he needs coming his way?
I found I was obsessing over things & not enjoying time with my boy as I should be. Try not to be too upset - you're doing all you can, it's a long, slow process.
I wish you lots of luck with your lo xx

I would tap your private SLT for as much guidance as possible, particularly for joint attention skills. Sounds like you are already doing that. I would use visual supports (picture schedules etc) as much as possible. Buy a laminator!!

Be prepared for NHS SLT to be a bit of a disappointment in comparison to private SLT.

I would also apply for DLA. You don't need a dx. I use Dla to fund private therapy.

In terms of intervention - have you looked into ABA? Lots of into on here and also a great facebook group - Aba4all.

Applying for DLA has never occurred to me. Is there any chance do you think of getting it? I know that it isn't means tested, which is good from our perspective as we wouldn't qualify otherwise.

ABA fascinates me. I would love to try as I just want to do all I can to help. But without a diagnosis, where would I start? And wouldn't have to pay for it all? It would be a stretch to say the least, but I would do it if I knew that he did have ASD.

I am doing picture and photo aids, and it doesn't seem to be working much. But I am going to keep trying. I have narrowed it down to just 4 photos of drink, shoes, coat and banana.

Thank you for your suggestions.

We got a Dla when she was 3 and had no dx (only severely delayed speech). We got high rate care. Check the cerebra guide when completing it. We also started aba before dx.

You would have to fund aba on your own but if it works you can try to get your LA to fund it via EHCP. Usually a long battle but doable.

We started Aba only with a consultant and only I did the tutoring in the first year. Tough but doable.

www.cerebra.org.uk/English/getinformation/finance/Pages/DisabilityLivingAllowance.aspx

there is a link to the guide. A must for claiming dla.

Thank you so much choc. This is incredibly helpful of you. Lots to think about x

When does your DS start reception? I think I would get the start rollong with an application for ab EHCP - even if hus intake is only 2016 as he will also need exta help in nursery. Is he in nursery yet? How does he get on?

He would start in September 2016, when he will be 4.4.

He doesn't go to nursery now. Never has. He has a place at a mainstream pre school two mornings a week from April, and a special needs pre school two mornings a week from September. The SN pre school doesn't have space until then.

Portage is coming next week, and I am hoping they will offer one to one for mainstream pre school. Maybe I'm being optimistic. I am completely clueless really as to what to expect. I don't know whether my expectations of anyone involved in the whole process are too high or too low.

You've been so helpful choc

How do I apply for a ECHB? Is this something for me to discuss with portage next week?

EHCP, sorry

oh, good you are getting a place in a SN nursery without an EHCP.

Do you know what kind of support your DS will get in the MS nursery. I would certainly liaise with the nursery directly.

Eventually, if not now, the chances are that DS will need am EHCP.

Ipsea have a lot of info on it

Are you under early years? I guess you must be? To get a sn nursery where I am you go via panel which means you have already been notified to education?