3 yr old suspected pdd - ABA solutions

[zumbaleena]

Hello all...have been lurking around here for sometime. looking for expert advise from asd mums. i have a 3 yr old with suspected pdd. she goes for her first diagnosis appt tom.

She has spontaneous phrase level speech for her needs, can label all colours, shapes, numbers upto 20, fruits, body parts, environment around her (red car going), family members, knows all her phonics sounds and can produce them correctly, can read CVC 3 letter words, can attend to an activity with an adult for 15 minutes and follow instructions in play, can follow 2 step commands with ease, has elementary pretend play, has mild problems like temper tantrums but mostly due to not being able to understand why things are being changed and is potty trained and can tell me when she wants to go wee wee. She is off diapers at night too.

We have had a very pro active approach in last 2 months and have put her on gfcf diet too. She has started doing the above only after our pro-active approach. before she was quite passive and doing eh eh.

Couple of questions -

1. In ur experience, with doing so much, can a child get diagnosed as pdd?
2. For ABA, I found this website - www.rethinkautism.com. have any of you tried it. It looks like a more cost effective way of administering ABA or is it worth the money to invest in ABA?
3. Can I ask for a statement for my dd without a diagnosis in hand? If yes, how do I start the process?
4. My heart tells me (after a lot of research that ABA/VB is what dd needs) - how do I get LEA to fund it? Has anyone had any experience of the same from the authorities in London? I am in west london....

Kindly help.

It is harder to get a statement with no official paperwork/diagnosis. How to go about it is all detailed towards the bottom right of this page, under Statutory Assessments and StAtementing.

I won't lie - it is hard to get a statement for milder SN, eg PDD rather than autism, but not impossible. You will need to think of and describe her on her absolute worst day.

It is hard also to get ABA paid for, and some LAs are very anti, but if I were you and had a child doing as well as this, I would invest in lots of AbA now, while simultaneously trying for statement/ funding, as I have seen VB / ABA have stunning results when used for v young kids with milder SN.

It very much all depends what borough you are in, so if you want to PM me?

Not sure if there is a PDD diagnosis in the UK - suspect not, and if any dx is given it would probably be an umbrella ASD one.

We do VB with ds (5yo now) who is high functioning - don't regret a single penny spent on it, it has transformed him (though obv is not a cure, and he still has many challenges, but importantly, we know what to do to help for the best). Your dd sounds like she has some brilliant core skills, so you probably wouldn't need something really intensive.

I would wait for a dx before applying for a statement - if you have an appt tomorrow you'll be in a better position to gauge if she'll get a dx. I do think, realistically, you stand more chance of a statement with a dx, even though it's supposed to be based on need.

ABA funding - ha, that's the million dollar question! I have heard of only a few families who have got the LEA to pay for a programme without going to tribunal. Your best course of action (if you choose to go down the ABA route) would be to start a programme, keep scrupulous data on progress, then after 6-12 months apply for funding via the statement. Without being able to demonstrate that it has made a difference to your dd, it will be virtually impossible to get funding - and even then, be prepared to stand firm and argue your case well.

Ds1 was diagnosed with PDD-NOS at age 2, although on his statement it is qualified by the phrase 'indicative of being on the autistic spectrum'. I knew had autism from the start but at that age he hadn't yet definitively met the threshold for all 3 of the necessary impairments. He meets them now but his original diagnosis has not been changed.

ABA is the best thing we've ever done. The only way I've heard of getting an LA to pay for it is to start up a programme yourself (for which we had to beg, steal and borrow) for at least a few months and then kick off the statementing process with evidence in hand of the progress that your child has made. We made sure we kept portage and SALT going in order to show how ineffective that was in comparison as otherwise it can seem that you have been blinkered and not been open to anything other than ABA as an option

so today was dd diagnosis first appt. asked a lot of questions by the community pediatrician. they feel she has some autistic traits but is going to be a tricky one to be diagnosed as she has been doing quite well after modeling. she will have a development assessment in 1-2 weeks and possibly a nursery visit and if they are not clear after that too, she will go for an ADOS test. the hospital were quite nice about it.

got a letter from NHS today putting daughter's dev assessment date in Feb 2013. strange strange system where kids should be diagnosed asap so that they get the correct strategies.

You will get used to it.. NHS is very much 'wait and see'. Somebody on here defined it as "let's wait for the damage/deterioration to occur and see how the child suffers". The best thing you can do is to not rely on the Proffessionals and do as much as you can, which you seem to be doing already.

u r right dev9aug

can someone help pls? I am wondering how to explain to my dd school that she needs a shadow and what is ABA VB. they do not think that she is autistic and may be I am being a paranoid mother but they have never dealt with such a situation before. so someone who ever introduced a shadow...how did you explain it to the headteacher?