Stuck in limbo waiting for an ASD assessment. What else can I do?

[ecomum]

Hello

We are fairly sure that my 2 yrs old DS is somewhere on the autistic spectrum, but we are on a 6 month waiting list for a psychological assessment. We've finally got an appointment for speech and language therapy, but no other help is available until he gets a diagnosis.

I just feel that this year could be the most crucial for his development and its being wasted stuck on a bloomin waiting list!

Has anyone else experienced this frustration? What else can I do? Would anyone recommend private therapy, and if so how on earth did you meet the cost?!

Any advice much appreciated

Thanks

Message withdrawn

Although my son was diagnosed with ASD 2 weeks before he was two, we still had to wait a very long time for any sort of intervention/help and this is still seriously lacking even with a diagnosis. You really are the expert with regards to your child and my advice would be to not wait for the professionals,else you may be waiting forever and lose time. There are lots of good books on the early interaction stuff and More than Words (by Hanen) is a very user-friendly book on strategies to use across the day to promote your childs communication/interaction.

I know how frustrating it is waiting, but try to remember that ultimately alot of the power in helping your son lies with you. For ages I was told to 'wait and see', 'just enjoy him' etc by the professionals and it used to depress and infuriate me. Feel for you ecomum, but again you're the expert.

p.s. do you sing to your boy? When ds was 2 I found that singing was a brilliant way to make a connection with him. It doesn't work so well now, but really helped then. Just a thought.
pp.s. I'm sure NAS Earlybird bent the rules for me and - because I was so convinced of ds's difficulties - signed me up for the next round of their parents course without a diagnosis. Might be worth a go.

Take care.

Me again, sorry! The most useful thing that I've done was attend a 2 day Basic PECS training course. PECS is fantastic and has really helped my son and the sooner you start the better.Hope this helps

Hi Ecomum,
Early intervention is really important, I don't have much experience of what is available privately in the UK, but there is a centre you could consider which is called BIBIC www.bibic.co.uk .
They are not cheap, but they give you some information on how to raise funds.
They give you some good ideas on what you can do yourself at home.
Also, I am reading a very very good book called "The child with special needs" by Stanley Greenspan. I think it could be very useful for parents with autistic children.

Hi, i'm new here so just working my way round the site.
I was interested in your post as my sons are both on waiting lists for possible ASD. My eldest has most probably Asperger Syndrome and he is now 6. The waiting list in our area for diagnosis is 18 months. My youngest is 3 and he has just been referred. I agree your son like mine needs to be seen so they can get the help they deserve. Unfortunately we have been told private diagnosis is not really an option as the LEA won't accept it. Yes i know we could pay so we know but when you have two children possibly somewhere on the spectrum it would be very expensive.
Have you contacted and pestered your Special Needs health visitor? Hopefully you have one in your area. We have just had a replacement after our last one retired and as soon as I could i took up both boys cases with her and she will look into the long wait next week for me.
I wish you luck in your wait for assessment but I would love it if our list was just 6 months.
Also I agree with Tobysmumkent as I too have pestered the clinic and my son is now on a shortlist if a cancellation occurs.

www.bibic.org.uk

yes they charge BUT they also have a policy of not turning away a child for financial reasons

The reposrts produced by BIBIC really helped with getting Sam a dx

If you do decide to go, the Somerset one offers very cheap accomodation; the Wales one- well, e-mail me. Grew up near one, live near the other and have known of them for 30 yeras; we find them really helpful (but slow withthe admin, telephone is easiest I find)

Is your DS going to a nursery / playgroup etc? In our area there are both specialist places at 'Children's Centres' and there are the 'Area SENCOs' who support other playgroups with children who have special needs. As Socci says getting a statement is a good way of getting extra help and support but the process can be started without a diagnosis and there are children with a statement without a diagnosis.

Early intervention is so important and as a parent all the support you can get is vital. PECS can be fantastic for children on the Autistic Spectrum and being taught how to use it effectivly is vital.

From talking to many parents I am afraid that fighting for the support they need, especially when they need it most, is what they had to do.

Have you looked at
the early support materials

Hope it helps

hi ecomum

I have just gone to assesmet and have posted

can't do links sorry but it is under \link{http://www.mumsnet.com/Talk?topicid=1373&threadid=218235&stamp=060924091312\CDC Reprt in!!!

My son is 2.5 and I really understand your feelings

Good luck

see sorry cant do them lol