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ABA - next steps after dx

(19 Posts)
dev9aug Sat 22-Oct-11 15:42:09

Hello,

Sorry for the long post, but thought i should include some background.
I am new to this site as a father of 2y3m old son dx with autism last week. Not sure where on the spectrum yet or how bad as he has been regressing for the last 4-5 months. Got a referall to a consultant in july, had an appointment last week and she more or less said it was Autism but would not diagnose it until she sees him till next time in another 3-4 months because of his age according to her. In the meantime we have been put on a waiting list for further appointments which could be up to six months. I thought early interventin was the key here.....needless to say very dissapponted until i came accross this topic on mumsnet and it feels like a new lifeline. We are in Reading and would like advice on ABA. Have been in touch with Peach/Autism parternership and would like to know how to go about finding consultants/setting Up programs for him so he could get treatment asap.
Any advice would be appreciated.
Dev

sickofsocalledexperts Sat 22-Oct-11 16:17:50

There is an excellent consultant called Sean Rhodes who I was chatting to the other day and who has some availability - google him under the ABC clinic I think. He is in Bristol but will travel or skype. You are right that the earlier you intervene, the better your boy's chances as the brain remains "plastic" at this age. Good luck.

JoMaman Sat 22-Oct-11 19:46:49

also look up the ABA UK yahoo group, it can help with the search for tutors. good luck

dev9aug Sat 22-Oct-11 19:59:23

Thanks all.

Sickofsocalled experts...
I did com accross his name earlier so I will send him an email now..
I have asked a number of different organisations/consultants for info.
How long does it typically take to set up a programme and have it up and running?
Is there anything i should look out for when selecting a consultant?

Jomaman
I have signed up to this group. Now waiting approval from moderators.

Regards
Dev

AgnesDiPesto Sat 22-Oct-11 20:08:02

We use AP in Leeds and they sorted it all out for us - they employ and train their own staff but will also train and work with indep tutors. So its up to you if you find indep tutors or do some ABA yourself under their supervision or just use their staff.

dev9aug Sat 22-Oct-11 20:25:07

Agnes..
I spoke to AP earlier. They did suggest that because I am not in their area(london), I am in Reading, I will have to find my own tutors. What about the consultants, they offered me three monthly visits from couple of consultants who travel down from US, is that the same case with you?

MangoMonster Sat 22-Oct-11 20:54:28

Peach do a 3 hr workshop with us every 3 weeks.

bialystockandbloom Sat 22-Oct-11 23:08:53

Welcome to the board. There are, as you will discover, many, many of us in your situation so it's a good place to talk to others who 'get it' smile

Worth talking to a few different providers, both organisations like UKYAP, PEACH, or consultants such as Sean Rhodes. Duncan Fennemore another 'big' name in Verbal Behaviour (strand of ABA). Each should tell you about what they do, how they work, what kind of approach might suit your ds and your family.

If you go for an ind consultant you would have to recruit the tutors yourself. We used Gumtree to start with. There is also an ABA tutor finder website (can't remember url but google it). And the aba yahoo group. The consultant would normally provide a supervisor for you. Generally, you would see the supervisor every few weeks, and the consultant every few months. This can be totally up to you, and how quickly progress is made, and of course how much you can afford! The cost does add up...

Depends on your circumstances of course, but we have done around 15 hours per week for a year and even with a relatively 'light' programme, have had amazing results (to the point where we may stop doing a full programme within the next few months).

Great news that you can start when ds is so young, it will really make a difference. Good luck.

dev9aug Mon 24-Oct-11 07:00:27

Thank you all. You have been a great help, especially mangomonster who spent an hour talkng to me yesterday and passing on some very useful tips.
Until I found this thread, I was googling "autism" and it was all doom and gloom and such a relief it has been to know that we can do something. Was feeling very useless before. I hope you don't mind a dad being around on this website though, DW is 6 months pregnant at the moment so don't really want her worrying about all this for the time being.
So far, I have emailed Sean Rhodes, and spoken to AP and Peach, just waiting for their response. I will try couple of other consultants as well, duncan fennemore is on my list as well, along with UKYAP although reading on their website, they seem to have the most intensive program.
One thing i am still worrying about is finding tutors, but we will cross that bridge when we come to it hopefully very soon.

dev9aug Mon 24-Oct-11 07:23:31

Message withdrawn at poster's request.

dottynosleep Mon 24-Oct-11 08:44:57

We started ABA before diagnosis, we used an independent consultant so it wasn't necessary (some providers ?PEACH require a diagnosis before you start). Regardless of diagnosis my ds had obvious developmental delays & ABA is jut for autism anyway. We've never done a full programme but worked on speech/language & ds' phobias/anxieties.

We've done a very free flowing VB/NET programme (main downside is that many new tutors find it difficult), I think most programmes are far more play based than the traditional Lovass style even if they don't market themselves as VB.

dev9aug Mon 24-Oct-11 08:52:01

One thing I have noticed reading the posts on this website. I probably haven't been very creative in choosing my nickname..... :-)

schobe Mon 24-Oct-11 10:05:53

I wouldn't bother waiting for diagnosis. It varies from area to area I expect but my DS was on a waiting list for 'multi-agency assessment' for just over a year. Then we had to go to eight 2 hour play sessions where he was seen by psych, OT, physio, 'nursery nurses', SALT etc. Then finally got diagnosis a couple of weeks ago aged 3 yrs 5 months.

I'm certainly glad I didn't put any efforts to help him on hold until after all that. The majority of it was a big waste of time imo, but we wouldn't have got a dx just from sitting talking to a paed.

Luckily I pushed and pushed to get him everything on offer prior to this, so the dx actually makes little practical difference.

Unluckily, what was on offer was not spectacular and we don't have funds for full ABA (just me at home bungling it) so you're way ahead of the game. Early intervention seems not to have been heard of in this country by the professionals, though it certainly has by parents as you can see on here. Good luck.

sickofsocalledexperts Mon 24-Oct-11 11:59:33

You don't need a diagnosis for ABA (or VB, which Sean Rhodes uses) to be effective. We were told there was a 3 year waiting list for a diagnosis, so we went private to Dr Daphne Keen, which we got on BUPA

MangoMonster Mon 24-Oct-11 12:49:04

I didnt come across any providers that required a dx. As ABA can also be used for general developmental delay. No worries about the call, just passing on the favour that fauxfox did for me when I was in the same position a couple months back.

StarlightMcKenzie Mon 24-Oct-11 13:11:28

If you get a dx, the NHS won't be providing any intervention. In this country developmental delays are the remit of education which doesn't have to deliver evidence-based practice like the NHS does.

AllSquaredUp Mon 24-Oct-11 18:03:38

We are on the same boat, got our son diagnosed private last week, we went to Dr. Daphne Keen last week, I would recommend her, it was very quick, set up in two weeks. I think most insurers cover initial diagnosis. We are with AXA

Though we were expecting it, feeling really low. I am also following up with peach , still feel left in the real dark deep forest. Wonder what my son feels like! sad

MangoMonster Mon 24-Oct-11 20:08:44

allsquaredup, we saw Daphne keen and started using peach a month ago. If you have any questions you think I could answer, feel free to pm me.

CinderEdna Thu 18-Aug-16 13:18:43

Hi all, i am looking for a new consultant fo rmy son who has been doing ABA for a while in London. I was keen on getting thought son Sean Rhodes or any consultants people have used and would recommend in london. thanks

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