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Here are some suggested organisations that offer expert advice on special needs.

So sick of trying to get a diagnosis or an assesment!! About to scream!!

6 replies

pramspotter · 18/02/2009 22:44

I cannot believe that we still don't have a diagnosis for DS.

Age 3: I noticed odd speech and repetitive behaviours. He had a great vocab but was not conversational AT ALL. GP and health visitor laughed me right out of their office because he hit all his baby milestones early.

Age 4: Reception teacher concerned about lack of eye contact, non existant social skills and abnormal speech. She gets school action plus involved. FINALLY the GP agrees to refer us to the paed.

Age 6: Finally sees the paed. He does a 5 minute fucking assesment and says DS has adhd. He says that he needs assesment for autism. Questionairre filled in by ourselves and the school scores high for autistic spectrum disorder. DS doing barely average work in school and not too disruptive...unless there are loud noises.

Age 7: DH and I are pretty sure this kid has autism or aspergers. He is bright yet it is very very obvious to everyone that something is very very different. Has all the hallmark signs. Best we can get from paed doc is a 10 minute review every 6 months and an apology for the fact that they are so backed up. Eventually we are promised a review by some multidisciplinary team.

Age 8: DS still isn't getting any help in school as there is no diagnosis. He is angry and won't communicate his feelings. I demand a psyche referral. He is smart enough to know he is "different". He has no friends. I am told that the "team" is catching up and will see him in the next year and he will see a psyche then.

Age 9: I am still pushing and they are still ignoring me. No one has done any sort of decent assesment on this child in 5 years. I just got told that we are looking at another 2 years before he is assessed properly but he is probably on the spectrum. Well no shit.

I can't take anymore. My son is 9, acts like he is 3 but with the reading and problem solving skills of a teenager. Everytime we take him out people point and laugh at him because of the way he talks and behaves.

I want some answers. I just don't know how to get them. I want someone to spend time assessing him and his abilities/disabilities.

Rant over. Thanks for reading if you made it this far.

If this is not easy to read it's because I am hitting the wine up tonight.

OP posts:
wasuup3000 · 19/02/2009 00:38

www.ican.org.uk/assessments

If this may help? I can are offering 6 free assessment places.

amber32002 · 19/02/2009 06:55

Sounds like a glass or two of wine is more than justified when remembering that lot. Goodness me...

This may be beyond your budget, but I guess a private assessment might be an idea too? The National Autistic Society has a list of people they recommend?

Shells · 19/02/2009 07:18

just wanted to say sorry you've had so much shit to deal with. sounds totally out of order.

AttilaTheMeerkat · 19/02/2009 07:43

School Action plus is a school based plan where outside agencies are involved. It should also be reviewed termly with yourselves. I wonder if that has ever happened?.

Re his schooling it is possible to obtain a Statement of Special Needs even without a definate diagnosis. It sounds like he is having a very hard time. Have you applied for a statement to date; this is an option seriously worth considering now and certainly before he goes to secondary. You do not need school's permission to apply to the LEA, besides which you can appeal if the LEA say no to assessment. School cannot do this.

EP cannot diagnose anything like ADHD or ASD but only make recommendations re schooling; you need a developmental paediatrician. Has GP ever been of any help re referrals?. Another possible option is to pay to see a developmental paed privately.

Make waves, contact your MP as well and get that person on board. You're one of his constituents; use their services. They have some clout.

pramspotter · 19/02/2009 08:46

I will try that Ican thing. Thanks. The paed guy that we are seeing hasn't been returning my phone calls. They just keep pushing ds's appointments back and back and back. He hasn't been seen in nearly a year. Was supposed to see the doc in October but they have pushed that appointment back to April.

Will see the GP.

OP posts:
TotalChaos · 19/02/2009 08:47

sorry you and your DS have had such a rotten time and so little help from "the system".

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