ASD - Who can I trust to help us??

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Hello
Please could anybody help or give advice on how I should best help my little boy as I?m starting to pull my hair out with worry here.
After a year of waiting, he received a diagnosis of ASD last April and in my innocent I assumed that adequate speech therapy, OT and behaviour therapy support would then be put in place by the local Child Development team. How wrong was I!!!
We did go to a block of sessions for Speech and OT and received (yet another) report offering pretty flimsy ?guidelines of support?. How on earth can a 4 week 20 minute group session (with parents, siblings & 3 boxes of toys on the floor) help him long term ? it?s not enough help. I was taking him out of school for this and I really think it was causing more disruption than had any benefit to him.
My little boy is 5 now and going into Year 1 in September. Just before the school break-up we had a meeting at the school with the SENCO & Local Authority Ed Psych, his Teacher and Parent Partnership Officer. The meeting was terrible, there was no honestly there ? it was so political, everyone watching what they said and trying to look good. They were like a pack of puppies. I brought up the subject of ABA and all their faces nearly froze in horror. The Ed Psych said coldly that we would have to pursue that independently outside of school only. Yet in a neighbouring school I know it was being funded for a little boy when he was in nursery! The Senco said that ABA method of behaviour therapy was more suited to children who were more withdrawn and this was not my boy?s area of concern!
I got an ABA consultant to visit and he came very informally and met with my little boy. He suggested 8 to 10 hours per week 2 hr sessions. He said I should put in for my statement now straight away and that I should look around for another school if the school were not supportive. I have two others going to that school so that could prove a bit of a nightmare. Also he said he was getting on (he?s 5) and I need to act now. I know someone who could implement the ABA programme but would I need to take him out of the school for this ? is it possible for the tutor to work from school and not just as a shadow role. ?? Also can anyone give an idea of what ABA would cost per month or year taking into account, tutors, supervisor and consultant? And is there anyone out there with an older child than mine that went through this and managed to come out the other side?? Please... Also you know I don?t know what or who to believe any more. If I get an ABA person to assess then of course they are going to say he needs a programme. But perhaps an expert ASD psychologists would be able to guide us and I could put the money into speech therapy and tutor support. I just don?t know what I do ? is there any independent organisation or individual that that best advise families on what to do for their child. I?m so afraid of stuffing this up for him, yet the financial pressure is also a huge thing for us and I can?t just jump into it either. Any ideas or help would be great. Also if anyone want to ring me or email me about this no problem either.
Sorry about it being so long.

Thanks Mx

these poeple seem experienced and neutral

You will not go wrong doing aba. It works, and there is proper research to back that up. My boy is now 7 and without aba, and with what woefully passes for autistic early intervention in this country, he wd have been far worse off. I would be v happy to chat on phone if u want to message me on here?

Thank you very much 'sickoftheexperts' - i would love to talk to someone really. As I can't access the computer all the time.

I will try and work it out tomorrow.

M x

Thank you very much starlight for the information and the link.

I have no idea what tribunal is all about - I presume its if we apply for a statement of support and we get turned down or we feel what is granted is not enough. Am I right? Do most people have to go down the route of tribunal? I mean no way do we have this type of money.

Thanks Mx

M x

I do appreciate this information.

I will ring the lady from autism support services first off as I would like to start a programme in Sept. But would have to look at how flexible it can be as I need to work, other kids in school, husband away etc.

I live in Ealing in London, so will put in a thread to see if anybody has any experience of dealing with them re. statement process or ABA funding.

Thank you very very much

M x

My son is 3 and has done ABA for a year. I have only positive things to say about ABA and can only echo all the bad stuff you are experiencing via the ordinary support services. I don't know where we would be without ABA. I doubt my son would have made any progress this year as despite lots of professional meetings and lever arch files full of good intentions my son who has moderately severe autism has received about 5 hours intervention in total in a year from the autism outreach service and speech therapist combined. And that is not unusual where I live. He is apparently too bright for special school - but does not learn conventionally or by exposure. Everything has to be broken down and taught. he gets a visit once a term if we are lucky and of course as they don't know him they give some very generic advice along the lines of take everything off the walls and buy him a white igloo tent to sit in and tick their boxes and swan off for another 4 months. He has learnt alot via ABA and I think it will enable him to go into mainstream school in time.

Go with an ABA provider who does not want to tie you into contracts etc. We use Autism Partnership and can stop services at a days notice. The good providers can pick up new clients tomorrow they don't need to tie you in. Sometimes tutors set themselves up as supervisors / consultants so you do need to check out how experienced they are / get recommendations as its not regulated. Go and watch sessions with other families locally - most parents are happy to do this as they have been in your shoes.

We do almost all the 'tutor' hours ourselves. Mostly at home but he goes to nursery for 3 sessions. To start with you would need to do most hours at home and then take it into school.

We were given lots of duff advice about ABA by the professionals - turned out none of them had ever used ABA so their advice was worthless. ABA is expensive - so they will make you fight to get them to pay for it.

There are some ABA schools in the South East you could look at.

We are having to go to tribunal to get funding. I think Councils down South are more likely to settle. Fiona Slomovic (Advocate) or SOSSEN might be able to give you advice about your LA.

Claim everything you can DLA, direct payments etc to help out.

You should apply for a Statement based on lack of progress - if you ask for ABA they will fight you all the way and it will take a year+ so you will have the evidence on ABA by the time you need it.

It is daunting, and we delayed for several months like you waiting for the Authority to do the right thing - when it became apparent they weren't going to we started ABA and haven't looked back. The other thing is you can usually tell if ABA will work for a child within the first 3 months - so we decided to fund supervision ourselves for 3 months (£400 a month for 8 hours) and do the tutoring ourselves and then review after 3 months. So I would say try it. Talk to family etc my Mum gives us some money each month to help and we also now have a volunteer Mum (an ex teacher with time on her hands) who comes 2 afternoons a week and use DLA and we scrape by.

I live actually not far from you Fullstop, you could even come and see an ABA session. I am in a different LEA, but managed to get ABA without going to tribunal (but we did self-fund for a year, in order to provide evidence that ABA is effective for my DS). I also use a very good advocate (not quite a lawyer, but with better SEN knowledge than most and full tribunal rights) who is way cheaper than normal lawyers, if it gets that far for you.She's called Fiona Slomovic and is actually based near us. There is also a firm called Elfrida Rathbone which sometimes does pro bono work I believe. Happy to talk on phone but not quite sure how to get your number as you are not registered for contact a mumsnetter?

Hello

This is really helpful thank you very much. My number is 020 89328218 call me and I'd call you straight back when it suits you. Or my e-mail is [email protected].

I only have access to the computer when at work as the one at home is on the blink!

I just want to say for the past year or so I've been looking into this site and I think you guys are pretty amazing - the help and support you give each other is wonderful.

Take care

Mx