Ds being referred to paediatrician

[forgetthepast]

My ds (2) is being referred for suspected autism. He's just had his 27 month assessment and is very behind with social and communication skills (12/15 month level). Everything else is pretty normal and he's actually ahead with motor and fine motor skills. I'm 99.9% sure he is autistic and have been for about 9 months. We have a SALT appointment this week. I'm so relieved that someone is finally listening to me. I know it's going to be a long road ahead. My reasons for suspicion are flapping, no pointing, poor speech, chewing everything, not always responding to name, high pain threshold, bad temper tantrums, diarrhoea, known food intolerances, no knowledge of others emotions, no imaginative play, loss of language, loss of waving and clapping. Probably more but those are the ones I can think off offhand. Just wondering if anyone has been through similar and if anyone has any advice or wisdom they can share?

Hi, yes my 4yo has recently been through the process and given a diagnosis. My DS has good motor skills like yours and in some ways his needs are pretty mild - his main thing is speech delay and social communication.

I'm bound to forget some stuff but for us the main thing has been trying to work out how the process works and exactly what support is available. Getting the paeds referral was the key thing for us, and then we went into a multi-agency group diagnosis process which was fantastic - consultant paediatrician, SLT, nursery nurse and council pre-school support rep all there together observing and interacting with a small group of children over a few weeks. And the whole thing was done reasonably quickly - around 8 months. The bad news for us was that there is very little support for pre-schoolers in our area and apparently the bar for an EHC Plan is very high so the team thought we were unlikely to get any funded help other than referral to local autism support team.

It sounds like you're already in the process for diagnosis so my tips from our experience would be:

• find out what funding and other support, if any, is available in your area for toddlers/pre-schoolers and when you can apply for an EHC Plan. Council website should have some info but we found ours v confusing...
• think v carefully about what you would want from a local nursery / pre-school / school and start planning for the next few years. And start talking to staff babout what support they can provide too. Our local day nursery have been amazing and have helped a huge amount with DS's transition to school, and school have been great at discussing his needs with us before he arrived too (including a home visit with reception teacher and SENCO)
• take a look at the National Autistic Society's resources and see if there is a local branch of NAS / other local autism charity that can provide advice / practical guidance
• if you can afford it, consider using a private speech and language therapist. Our local NHS has had resources cut massively and DS has only had 6 sessions all year
• take a look online at visual supports like visual timetables (we have one from Amazon that you can stick 3 pics to - now / next / later). They work v well for DS.

I hope the process goes well for you and you get some good support.

Hi OP. My son is 2.5. We have a pead appt at end of month for suspected autism. We started an ABA programme around 2 month ago and my son is making progress (slow but still progress). We applied for DLA which helps us fund the programme. It also allows him to access 15 hours free education at a local nursery, which helps him social with peers. If you have any questions PM me. Happy to chat further.

Hi, my son had Autism - he is six and was diagnosed last year. As well as being behind with speech, he was also behind in all other areas.

My daughter (2 in July) is similar. Speech and understanding is at 12-15 months but is on track in most other areas. She seen a paediatrician last week. She had already been referred to SALT and has also been referred to the early years inclusion service for when she starts pre-school.

It might be that your son is a little behind with speech. It doesn't neccesarily mean autism. But if you're worried don't take any shit from professionals. My son was delayed in all areas and had most signs of autism but they told me he was just slow? He was diagnosed with autism at 5. They are taking my daughter more seriously, I guess they have to because her brother had autism.

Good luck!

Thanks everyone. It's interesting to hear everyone's experiences. Hate can I be really nosey and ask how much ABA is costing? It's something I've seen a bit about but I imagine it's very expensive. He is currently in nursery 3.5 days but our nursery is still on the process of being reviewed for the free hours at 3 so I'm not sure we'd be able to get the free 16 hours there. I wouldn't want to move him either as the nursery he is at are brilliant with him. He is a very strong bond with one of the girls, even cries when she leaves the room.

Im in same boat, Paed app end of month. He sounds very similar to your little boy op.
He has just began pre pre school (3yr) and they think they will need a one to one for him because he has meltdowns when transitioning to something that isn't his agenda.

I'm so scared & stressed for the future but I'm trying to be positive.

I'm going to ask nursery to do out a report to take along to paed.

Will be following this thread with interest op.

ABA in NI is £20 a month membership & you have to sign up for 12 months then £75 for a monthly 2 hour home session. I'm going to wait until paed app b4 doing anything though.

ABA seems to be different prices depending where you live and the option you choose. We pay a tutor £15ph and pay a consultant £40ph. The tutor does 6 hours a week and the consultant does 3 (but this is our choice). Most consultants do 4-6 week visits to assess the programme/look at progress/provide advice/changes etc. We live in north east England by the way.

He had his first SALT visit today. She can see why he has been referred to Paed as there are concerning behaviours but a few positive ones too, she was very positive about his obvious bond to us. She is going to observe him at nursery and we have another appointment at the end of the month.