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2 year old ASD but no diagnosis

3 replies

Salak100 · 13/08/2018 09:44

Hi All,

I was wondering if the forum members might be able to support us with some advise.

Our son will turn 3 in October and we think he is on the spectrum. We have had 2 appointments with A Pead and in her 2nd report, she stated that it looks likely that he is on the spectrum. The next steps she has outlined are that she is going to visit his nursery to observe and then get a panel together and decide ( I am assuming decide the diagnosis).

We have in the meantime put our son in an ABA programme with a providor in North London for 5 days a week (3 hours each day). The problem is that we did not anticipate the logistical challenges. It is 2 hours commute each way from Basingstoke. This surely cannot be good for the little one. One option we are thinking of is moving to london. My job is flexible so will not be a problem and we have identified Enfield as an area we can afford. My worry though is that by moving to a new area, will the process with getting him diagnosed be reset and will we need to start all over again with GP and then waiting for a paed appointment. Also, EHCP plan delay is aworry. I know it is very difficult to get ABA funding and we are in a position to fund it ourselves for another year but i want him to get proper 1 to 1 support in school.

My question is thus: considering our situation, should we move or stay put? Any advise on this would be most helpful

Regards
confused dad

OP posts:
LightTripper · 13/08/2018 12:27

Can you find out how long it will take to complete the process where you are? It may be worth hanging on for a diagnosis before making any decisions if it's going to happen soon (once we were referred for that final assessment stage it took us about 7-8 months to come to the top of the list where we are I think).

ABA is a controversial one, and it does seem like it takes a huge amount out of all your days (4 hours driving and 3 hours ABA, so practically a full time job), so I can see why you are weighing up the elements.

Before making a radical decision on moving I'd do some more research on how supportive any destination borough is more generally (e.g. how good is the education system for kids on the spectrum? What sort of support is provided)? From what I've read I don't think anywhere will pay for ABA, so the question would be what other services (SLT, OT, physio, etc.) you may be able to access in different areas, with and without a diagnosis. For what it is worth we are in Hackney and have found access to services really good, but we haven't needed a huge amount so we may not be a good test case.

Your DS is going to be in school for a lot longer than he'll be pre-school, so I would focus on good school support in any move (as you say, how easy it will be to get an EHCP and whether the LA regularly appeals all EHCPs would seem a key decision making factor - if you can avoid having that battle on your hands it frees up so much mental energy for more constructive things).

How are you finding the ABA so far? Do you like their approach? If you lived closer to it would you be happy with it? Are you both working, or would you consider delivering the therapy yourself with distance support? This is what we do - talking to an ABA advisor every 2 weeks by Skype but to the extent that we do ABA we "deliver" it ourselves: in our case it means we end up not doing much, but I am much more comfortable with it, as I know that I can focus just on things I am convinced will genuinely help my DD, and that I can make the judgement on what things to target and whether she is enjoying it or not rather than leaving that to somebody else. I didn't want to risk that somebody else would be discouraging stimming or pushing her beyond her boundaries or making her feel it's not OK to be herself, for example.

I think in the UK the authorities do not really believe in ABA, and I am not that convinced of the evidence for it (in particular on the long-term impact on mental health) - but on the other hand there doesn't seem to be any other support on developing self-care, emotional regulation and social skills, and I think some of the methods (e.g. breaking things down into small steps and giving positive reinforcements when your child achieves something new, ideas for ways to make things more engaging/fun) are genuinely really helpful just as parenting/teaching methods. Our ABA therapist has also given us some great ideas (like doing a diary to talk about good and bad things from the day and drawing pictures of things she achieved or things that upset her to help her work through them) that I'm not sure are really ABA at all, but I think have been really good for DD.

It's such a hard judgement call and it's such early days for these "therapies" that the jury is really out, so we are left as parents to just make our own judgements with no expertise which is a very hard place to be...

Salak100 · 13/08/2018 14:37

Thank you for your reply LightTripper. It is early days for ABA, we are in week 2 but for me the main thing is whether DS enjoys it and I can see he gets excited when we park our car and runs towards the nursery door so that is a good sign. I have read about the pitfalls of ABA but I spoke to 2 families and both were very positive about it so that was comforting. We did think about a home based programme but just did not know how to start and also not sure if we would be able to get trained tutors. The plan was therefore to start him with a provider for 6 months and then move to home based but now with all the traveling, it makes more sense to move to London as we dont think DS can cope with being n the car for this long.

Is there anyway to know which london boroughs are good for support and schools for SEN. I did see a few threads here but they are from 2012 and a lot might have changed.

In terms of work, my wife had to quit as DS needs constant care and attention. We also tried private SLT but that did not seem to make any difference. He is going to a SEN nursery but he is just pushing along a stroller there so not convinced that it was working.

Regards

OP posts:
LightTripper · 13/08/2018 17:03

Ahhhh I see, makes sense. So hard to make decisions. Sounds like you have found a great place if DS is engaged and happy to go despite the long journey - I can see why you are tempted to move closer!

If you look further down the thread list there is a thread for people with kids starting primary in September 2018: if you post on that you may get some answers as most people have EHCPs and a few are in London (I think at least Haringey as well as Hackney). You could also try the local Mumsnet boards for the boroughs you are interested in. I'd also call the National Autistic Society: they have local branches and may be able to put you in touch with somebody who knows about the level of support available in Enfield.

Best of luck,

LT

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