Intervention whilst waiting for ASD assessment

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Wondered if anyone has been in this situation and has any words of wisdom.

DS is nearly 3 and the wait for paediatric appointment is about 12 months. Such a confusing time as I'm back and forth thinking he's really struggling and then the next day thinking he's doing fine and maybe won't even be diagnosed with ASD. He's speaking in short sentences and coping okish at preschool. The main issues are that he paces back and forth a lot (I'm guessing sensory issues) and that he's difficult to engage and play with. Lack of imaginary play and some other signs too.

Now I'm starting to read up and it seems quite accepted that early intervention for ASD is helpful, I'm thinking we should start something this year to help him. But don't know where to start. Research autism website is good for background, but is there any kind of regulating body for interventions? What sort of thing would nhs offer if he were diagnosed?

Finding it all quite isolating as it's constantly on my mind but I'm not discussing it much with DH as I think it'd be too much for him just yet, as he's only just starting to get his head around the referral. And the family / good friend I've confided in just reassure me that he seems sociable and fine, which is reassuring but then the worries soon creep back in...

Sorry for a very long first post

What is offered by the nhs varies from place to place. The services should not be dependent on a diagnosis but should be needs based. So in our area before my ds was diagnosed, he had two communication disorder group courses run by SALT, we got assigned a specialist heath visitor, got referred to a special needs dentist and got referred to our local disabilities centre, which runs courses and offers advice.

If you check your 'local offer' it should tell you what kind of services your local authority offers and how to access them.

For us I found the most useful interventions were:
Occupational therapy (sensory integration), we had to go private as there was almost no service in our area at the time.
Intensive interaction.
Reading lots about the subject, particularly by autistic authors, 'the reason I jump' is a brilliant book.
Learning Makaton, our disability centre runs free courses
Using visual supports.

This is with hindsight, it's taken a while to learn and implement things with ds. It's also really trial and error to see what works best for him and for you. I found it very difficult to get my head around things initially as it was a bit of a shock but now ds is nearly 6 I feel like things are slightly more under control.

Do pre-school think he needs help? they should be able to access support and funding from the LEA (see local offer as PP said)

You could also speak to the paediatricians secretary and offer to take any last minute cancellations.

As liv says, provision varies by area and the UK doesn’t really do much early intervention IMO.

We were referred, and accepted onto, the early help assessment programme when ds was 3.8. We only waited 3 months for diagnosis. He saw an NHS speech and language therapist a couple of times for assessment and had an assessment with occupational therapy though we had to specifically apply for this and there was a waiting list. He was not offered therapy by either as his language was considered too good and OT I think only really work with children with significant physical issues. They do not deal with sensory issues.

What we did get was:

• 7 week parental course for children with social communication difficulties (I had to wait for a space on this)
• 10 weeks on a sn’s play group run by specialist teachers. This was a mix of children with different issues, not just ASD
• a 6 week group later designed to help children follow adult led instruction - this was pointless for us as ds hated it
• reports from the professionals we saw to aid EHCP application

You may be lucky and live in an area where they still offer portage and other things, we don’t. But the reality is that regardless of whether he has ASD, he will benefit most from what you learn and implement at home. So I second the advice to read as much as you can and find strategies to use every day.

We pay for a private OT who has been amazing, we are struggling to find the right private SALT for us as there’s no real way to get local recommendations. Both are expensive at £75 per hour (SE outside London).

Books I recommend initially are:

• an early start for your child with autism
• more than words - Hanan book
• understanding your child’s sensory signals
• how to raise a happy autistic child
• the out of sync child/has fun

Look up techniques such as intensive interaction, floor time.

Watch you tube channels - Vincentville and Nurturing Neurodiversity have boys of a similar age to yours.

Thank you so much for your replies, all really useful ideas. I will try to look up the local offer. Interesting OT isn't very available in your areas but that you found it most useful, might be a good place to start.

Hmm his preschool have taken the lead from me really, apparently he doesn't initiate interactions with anyone while he's there but he is very happy to go each morning and joins in with a few things. I do worry though as he's so difficult to engage whether he's just left to potter aimlessly a lot of the time :( I think I need to be a bit more demanding next year and suggest he has a visual timetable etc and see what help they can access for him. I think because he's talking a bit and doesn't have big melt downs etc his needs could easily be overlooked.

Thanks for book recommendations will look them up.It's just finding the time / head space to implement things that's tricky isn't it? I also had another baby this year but she's starting to take slightly longer naps now so I have a little bit of time to try and engage DS a more.

You should also look at some speech and language therapists on YouTube. Chirp is good and informative. Walkie Talkie speech therapy has some good videos of her working with toddlers.

Have a look at Child Autism UK. We are paying for them to come and teach us how to do ABA at home as we can't afford to fund a consultant and therapist. My son is 2.3 and not diagnosed yet but I'm sure he will be in time. We've been referred to the early years forum.

Thanks again for the different ideas, I'm slowly investigating. Hadn't thought of YouTube, but think it'd be good for seeing different approaches I can use.

People that use intensive interaction did you go on a course or teach yourselves?

Seems like our local offer is nothing until diagnosed, except SALT, so I'll try and go to one of their drop ins to see if they can advise.

Probably is the least of my worries, but DS is very fussy with cups at the moment, anyone else experienced this? He will only his sippy cup, or one specific straw bottle. Need to teach him to use an open cup but he won't even try anymore. It's strange he has never played around with pouring - even though we have cups and toys in the bath and paddling pool etc, he's not interested. So at the moment I'm getting him to pour his water into the sippy cup from a small jug to at least get him used to idea of controlling a pour action

My ds still only drinks out of a straw bottle at 5.5. He’s never liked drinking from an open cup. Perhaps he doesn’t like the feel of the water on his lips or the unpredictability, I don’t know. Nursery made a bit of a fuss about it because they used open cups there but at school each child has to take in their own water bottle each day so it’s not an issue there.

I would say encourage him to use one but don’t make a big deal about it. In the scheme of things it’s not that important right now.

YouTube is great.

Something we had for DD that I think was probably helpful was a play support worker went in to help DD play with other children. It was very gentle (and just for an hour a week) - she just went in and if DD was playing alongside somebody would try to get them involved with each other - e.g. prompt the other child to ask DD for something, or ask DD for an idea for the other child's game or vice versa. Just gently commenting and helping make connections. We had to pay for that but it was not expensive in the scheme of things (a nanny with some SEN experience did it who the school used for various interventions with different kids - it was about £15/hr I think).

Otherwise it's worth looking up "scaffolding" to just get ideas of how to help them go a tiny baby step outside their comfort zone playing. It's much easier if they go out little by little to engage with other children, rather than expecting some massive leap. We also used to do it with soft toys (e.g. put a soft toy in DD's high chair and do a voice for it - make it be a bit cheeky and not get out so DD had to ask it to move - which she enjoyed and was a nice way to practice asking for things in a non-stressful environment).

SALT can be very good as well. Depends a huge amount on the therapist. DD's went to the pre-school and helped support her in doing turn-taking games and conversations (e.g. asking the same question back she'd been asked, or asking follow up questions).