Awaiting ASD diagnosis, fed up and want to take control. Any advice on ABA would be of tremendous help.....

[Cheekychip]

As the title says, we are still waiting for ds to be given a diagnosis. He is 26 months old and I've known since he was 15 months old that he is on the spectrum.
He was seen by a paediatrician at 19months old and I got the 'wait and see' response and told he would be reassessed in 6months. Well that reassessment is nowhere in sight as they are 'behind'. Plus we are moving counties in the summer so we'll join the back of the queue there too!
We have occasional support from SALT and weekly 1hr portage.
But it's dawned on me that I need to take control here as ds is not getting the input he needs and I'm a keen believer in early intervention.

So where do I start? I've some old threads so I'm not sure how up to date that information is. ABA is cropping up a lot and I'm thinking this is something we need to try.

Could anyone recommend an ABA consultant? It's tricky because of our move in the summer. We are currently in SW London and will be moving to Leicestershire.
Also, vp or lovaas. Ds is 26 months non-verbal, naps 2-3hrs in the afternoons. SALT tried PECS with him but no joy.
I'm thinking that I'd do the therapy once trained as there's no way we can afford loads of tutor hours but I also look after dd (his twin) so probably not that practical. I could possibly get their gran to look after dd so that I can focus on ds.

I feel like ds is being let down by the system and I want to do the best for him that we can.

Any advice would be much appreciated

I am sorry you are feeling so helpless. Waiting is a horrible game. Are you moving anytime soon? You could get trained and start the sessions yourself.

Hi salondon.
I really do feel helpless and cheesed off that time has been wasted. Also, I don't know anyone else with a dc on the spectrum so I don't feel in the loop. There is a local family support group but apparently we need a diagnosis to go to that.......
It looks as though we will move in July. I would be keen to start up ASAP but also mindful of continuity once we decide on what/who to use.

This is what helped me (tips I got from other mums)

• Keep a video diary
• There are quite a few parents of ASD kids in SW London/Richmond I think. Some on this forum too.. May be post a new thread if you are looking for meet ups. Facebook might have some groups too
• You can start the ECHP process now. You dont need a diagnosis
• See if the PEACH training is something of your interest
• A mum here pointed me to rethink autism. That helped me

A lot of consultants travel, so moving mighy not be an issue.

I got trained and had a consultant on boatd and did the work to beginn with. We would't have been able to afford the tutors in the early stages. ABA is not cheap if you
Fund it yourself. But getting trained up and starting to do the actual work under the guidance of a consultant might be an idea.

Hi cheekychip - I've pm-ed you

Thanks for the pointers everyone (I had to google some of the acronyms I'm so new to this!)

• the video diary, how formal does this need to be? Eg. Do I need to prove the date it was taken?

-I've found a fb local group that meets twice a month so that might be useful :) -is there any need to start the ECHP process yet or should I wait until he's a bit older? He's only 26 months.

I'm going to get trained up ASAP. Is there a website of approved consultants?

Is there a sure start centre near you? They have asd groups. They can also fire up referrals.

Video diary - often and informal I do. Lots of little snippets when ds is being " quirky" used as evidence, dates never questioned

Try ABA4ALL Facebook and Yahoo ABA UK group
There isn't an official list of consultants so you need to check out on boards like this / Yahoo / FB and get recommendations as there are some useless and very overpriced so called practitioners out there.
I would apply asap expecting to be refused and having to appeal (but knowing this would be case even if you wait another 6-18 mths - few LAs want to issue Plans for under 5's)
We applied at that age and had to appeal refusal to assess - they backed down quickly on that - they we had to appeal the stmt to get ABA in it. It took 18 months to achieve that. We got the right statement just before this 4th birthday!
We did ABA ourselves with just a supervisor and that worked well for first 6-9 months then we got caught up in tribunals and got bit burnt out. You will also almost certainly need to cost for private EP report etc too.
Look at Caudwell Children for funding also a list of grants for ABA on above ABA4ALL etc. Cerebra used do grants for private speech therapy.
2-3 hours a day at 26 months will still produce progress but easier to do with dedicated time without another child around.

Marianne Wooldridge is an ABA consultant I think near Leicester via a company called Dimensions

Definitely you are doing the right thing starting ABA ASAP

Just our of interest, do any of you do makaton or similar for a dc this young?
Or 'objects of reference' which, as I understand it, is eg spoon for mealtime, sponge for bath time etc?

There is a surestart childrens centre which we sometimes go to but when I called today they were a little stumped about sign posting me :-/

The fact we move counties in the summer complicates things as it will be a different LA. Perhaps if I get ABA in the go and a bit more clued up then I can tackle things with the LA when we move.

I've heard Caudwell crop up a few times. Would we need a diagnosis to get their funding? I'm also applying for DLA. We need any financial assistance we can get as even with me doing the therapy there is the cost of the consultant plus I really need someone to look after his twin so that I can focus more on him.

Sickof do you know if Marianne comes recommended? I googled her but couldn't find anything on forums commenting on her.

Senvet, I've tried a bit of makaton but he's not interested. I do use objects of reference though which works quite well :)

If you call, write, complain etc you'll probably get seen faster. Squeaky wheel gets the oil.

Also if they know you'll drop everything & be there within 15min of someone not turning up to an appointment, you may well get squeezed into a cancellation.

You can learn a lot of ABA by yourself. There's an organisation in Northern Ireland which runs an online training programme called Simple Steps. Ambitious about autism in north London do short courses. And you'll get book recommendations on here.

But when I move won't I have to battle it out again or once you have the statement or will it travel with us?

Thanks for the extra ABA info. Think I'll be dreaming ABA tonight.....

Getting an ASD diagnosis now helps- it'll travel. So will 'language disorder' 'sensory processing issues', 'delay in x/y/z'. Saves starting from scratch.

Even if he only gets a 'probably ASD now jump through some hoops' letter and sits on a special "autism diagnosis formal multidisciplinary clinic" waiting list, you can always pick up from that point in the new area.

Or 'forget' to say you've moved and come back down for the assessments.

In terms of statement/ EHCPs. From requesting today to final EHCP will be 20 weeks max, unless they refuse to assess or refuse to issue. So all being well, it should be sorted before you go.

If you get one, the new area can reassess, but the 'old' one stands until they've done so. If you have an appeal registered, I think it keeps going even if you move (you might want to check with IPSEA on that).

Dla also opens up extra child tax credits. And possibly carers allowance for you. It should mean your DS is entitled to 15 hours free education from his 2nd birthday (otherwise it's the term after third birthday).

In some areas it also means you get respite care entitlement, which is council paying for specialist childcare for your ds so you get 'short breaks'. Often this means 25-100 hours LA-funded childcare per year.

Thanks Meir, with the above in mind I'll crack on all fronts then.
Why do they have to make it so blinking complicated?

"forget" to say you've moved, hehe.......I'm so wet behind the ears. I need to get much more crafty clearly!!

When he was seen at 19months the report contained "delay in his speech and communication" and "I think he might have some social communication difficulties" and he was referred to the Social Communication Assessment Team to be seen when he turned 2. But it seems they are "too behind" to honor that and have said he won't get a diagnosis before we move but that he might get a review.

I'm trying to be diplomatic and I've passed on a message through the Portage therapist who comes weekly as she knows the paediatrician and might be able to get us seen. If I have no joy with that I'll write to complain. Am I right in thinking there's no point writing to the centre themselves, do I need to go higher up?

If he had portage before age 2y, he should've had a statement. The old Sen code of practice included 'any educational provision for a child under 2years'.

Definitely worth ringing ipsea

Regarding complaints, there's a department called PALS linked to every nhs service which helps people make comments/ suggestions/complaints. If you find the website of the Trust managing the clinic, it'll be on there.

Thanks for the pointer Meir, I have included some points from the SEN code of practice in my request for an EHC.

Why did none of the professionals involved with him tell me about this last year? It's scandalous really and a good job that there are websites like this with pools of experience.

I'm going to call ipsea to tomorrow too before I send off my application.

Right........now onto PALS.

Google Cerebra DLA guide- it explains how to fill the form in.

And phone up the DWP's DLA helpline to get a datestamped form posted out to you. You can also print it off online, but if they send it, the DLA gets backdated to the date on the form (provided you get it back in a reasonable timeframe)

Your county's "SEN local offer" website section will have a link to "independent supporters". Meant to help parents learn the system & speak up for their child.

In some areas they are really useful, in others they're LA lackeys/ jobsworth job creation scheme/ founts of misinformation. Yours might be the good ones.

Marianne highly recommended yes

I phoned for my DLA form thanks and arranged appointment with local charity who help fill them in.....I'll look at the cerebra guide too first as when I made the appointment today and she asked me what do I support my don with above what you'd expect for his age I was a bit stumped and not sure as he's still quite young. She said if he gets DLA it will probably be the lower amount as he's young. Anything is better than nothing!

I must say that there wasn't much info flowing when I asked about EHCP's but she said that she'd get so done else to chat to me about that who knows more. I tried calling ipsea I few times but it was always engaged.
I decided to send off my request form anyway.

The good news us that after contacting my local NAS branch they are happy for us to attend with no diagnosis, which is not what his speech therapist told me.

Hi. My DS is older (7) and high-functioning but we have started an ABA programme and received DLA without a formal diagnosis. If you can possibly afford it, I would recommend ABA - we have seen real improvements and it has given us so much hope. I wish we had started sooner. We found our consultant through the Yahoo ABA group.

The one thing to watch with ABA is that some autistic adults feel it was used to force-teach them the wrong things.

So, for example, a dc who hates itchy clothes might be ABA'd into wearing their school uniform. But it's very uncomfortable- so makes them unhappy, or feel adults can't be trusted to understand their needs.

On the other hand, I've never seen any complaints about parents using ABA to help a dc learn how to request things- like their TV show, favourite dinner, more playtime.

So the tip is probably to look at the direct payoff to the dc, of learning this skill, both short and longterm.

Doing a few bits for family harmony and your wellbeing is fine- like putting laundry in the basket, not tipping the toys everywhere at bedtime. But it shouldn't be a big focus- you need to target well, especially if a dc is having difficulty learning. The more it fits their needs, the more they will be willing to learn