I am wrong to want a diagnosis for DTS (both) for ASD and/or AS?

[woodywalker]

Hi I am new here, so many abbreviations will no doubt be wrong! I have identical twin boys, with both identical and completely different symptons. So far, starting from Yr R (they are now in Yr 5) we have seen/had help from the Senco's, seen 1 Ed Phsyc, seen a mental health specialist from child & family guidance, Occupational therapist, etc etc, but no-one wants us to persue a diagnosis or a statement. Why? My experience so far has been the more you know, the more you understand and are able to push ( and you really have to push) for extra support in school. My big concern now, is that the behavious or symptons are getting stronger as they mature & develop & with secondary school looming I want to get them all the help & support possible. I read some of the threads and can empathise with many of you. Its so hard, I spend the first five years of their lives wondering what was wrong with them, what had i done wrong, why couldn't I cope ( have another DS 2 years older as well) etc etc. The mental health specialist from child & family guidance was a life saver. But she was a one-off. Totally committed to her work and did lots of extra support appointments outside of her 'day nhs job' (free I might add). She is now a Mum, and not replaced due to NHS cuts. There is no one else with her particular skill & expertise on the team & waiting lists are longer than ever. So where do you go? I'd love to hear from Mum's with DTS for DTD with ASD and/or AS of a similar age or older and their experience, especially from the educational side of things. Our local schools are good, but very large. They are standing out, & bullying is a real concern, thanks.

Would suggest crack on with requesting statutory assessment as it's being abolished next year. Suggest do it today! IPSEA website have model letters and a helpline.

Diagnosis process is improving

Thank you so much for that mariamama! Will check website out now.

If the local team have had 3 years + to articulate to you the exact nature of your child's issues and haven't managed it, it's time to DEMAND a second opinion, for their sake. There are a number of related disorders other than ASD:- Auditory processing disorder, sensory processing disorder, social communication disorder, dyspraxia are just a few that show similar symtoms to the untrained eye, yet still require support.

Guys, GOSH, Maudsley all do second opinions if you are in the South, I'm not sure about other parts of the country - sorry.

Go to your GP today and put the formal request for a second opinion in writing. When you've done that pop onto the IPSEA website and make a seperate request for a statement to your head of children's services - again formal and in writing. The IPSEA website has model letters.

Lastly a change of school might help as teachers can adversely influence your struggle to get a disability recognised, if they keep denying there's an issue. Do remember primary teachers only get a day or so's training on ALL SN's as part of their PGCE's, they aren't experts, so if your child presents in a way they haven't seen before they may not understand it. This is a last resort though.

If you have the money, lots of people on this board seem to have gone to see Daphne Keen, GOSH or other NHS expert privately to get the diagnosis done in the event of local shilly shallying.

Whatever you do, it needs to be done now before secondary transfer.