Private Diagonsis

[yorks]

Hello all,

 

Just wondered if anyone knew where I could access a private assessment for my 11 yr step son. Already has a diagnosis of ADHD and we are getting nowhere with statutory services to finally fully assess if he has Aspergers. I'm guessing that these private consultations get thrown out by LEAs, but I'd like to know one way or another for my own peace of mind. We live in the Essex area but if necessary I would travel to see someone whose got a good reputation.

 

Many thanks

 

yorks

[baddad]

Hi Yorks -

 

Not fully sure I understand your question, so just seeking a bit more background. Is it that you're getting nowhere with statutory services because you can't access them or they are not available, or because they've assessed your son and they don't think he's on the spectrum? If the former, it is something you could take up with your GP, maybe, asking for a referral the LEA will recognise. I don't think the GP could refuse a request to go out of region if there are no services available in your region that can make the assessment. If it's because they have assessed but don't think he is on the spectrum I'm not sure why that isn't reassuring, or what's to be gained, apart maybe from even more confusion, if a private practitioner comes to a different conclusion?

 

Hope that's helpful

 

L&P

 

BD

[yorks]

Sorry your right I should have been a bit clearer. We are involved with the local CAMHS but they are dragging their feet like you wouldn't believe to undertake a formal full assessment for Aspergers. The ED Psych is utterly useless I mean totally incompetent and has done nothing to sort this out. I don't know what else to do to get this assessment sorted because I've been told it has to go to a special panel and the waiting list is 2 years!!!!!!!!!!!!!!!!!!! All they keep saying is that he does have very strong Aspergers tendencies blah blah blah, but I can't get anybody to actually do a proper assessment and give me a straight answer.

 

The reason I would like a private assessment is to basically confirm what I already know, which is that he does in fact have Aspergers. That sounds a bit arrogant doesn't it, but my instinct is so strong about this I'm not prepared to wait another 1 year for services to sort themselves out. Believe me I'm more than happy to be proved wrong, but it's so frustrating when I can't get a straight answer from any of the professionals involved.

 

Not sure if that is any clearer lol.

 

Cheers

yorks

[baddad]

I think I'd go back and hammer at CAMHS/The Ed Psychs door if in your position - put it in writing that you want a firm diagnosis one way or the other rather than a 'traits' diagnosis that means nothing. I'd also ask them - in writing - if they come back saying they can't diagnose, for a referral to someone who can, and an explanation for why, if they couldn't diagnose, they have not told you that in the first place rather than wasting your own and your son's time. Within that, ask them to send by return details of their formal complaints procedure, as you feel that it seems you have been referred to the wrong service and no one within that service has advised you of the fact despite (x number of) appointments and meetings.

All that stuff about 'special panels' and 2 year waiting lists sounds like BS to me. I can't see how there can be a 'panel' to decide if your son is elligible for assessment(?) - either he's not diagnosed and needs to see someone or he is and doesn't. I don't see any way that a 'panel' comes into the equation, and I would ask them, in the strongest terms, to clarify what they mean.

 

Whatever you do as far as CAMHS are concerned do it in writing and make sure that anything they tell you is in writing. If someone phones you 'to save time' say 'lovely - thank you; but now we have saved time can you please confirm everything you've told me in writing, so we've saved time and have a permanent record too.'

 

I know all that sounds a bit of a pain in the bum, but easier in the long term (and less expensive) than getting a private dx which the LEA and ed psych dispute anyway. And if they come back and say, well his dx is ADHD and not ASD then at least you''ve got a firm definition to base any further discussion around.

 

Hope that helps

 

L&P

 

BD

[darky]

I agree. I know resources are tight, but waiting so long is a nightmare. Getting private dx could be as well, and you would be seriously out of pocket. The waiting times here for a full dx the last time I looked were a year plus, but there were a lot of appointments to get through from different professionals. Is it the same in your area? I hope I don't sound biased, but private dx can be expensive, and LA's only have to take them into consideration. Put it simply, they may say, well we have considered it and we don't agree. I'm not saying that will happen, but it is a possibility. I've seen a lot of parents frustrated, that's all I can say.

[bb1976]

I advise any one and every one to stay away from camhs they have messed up big time with my son and now to cover there tracks i am being accused of having a personality dissorder and making my son ill they are full of there own importance when actually they know not alot but refuse to send you to someone that can actually help!!!

[bb1976]

I think I'd go back and hammer at CAMHS/The Ed Psychs door if in your position - put it in writing that you want a firm diagnosis one way or the other rather than a 'traits' diagnosis that means nothing. I'd also ask them - in writing - if they come back saying they can't diagnose, for a referral to someone who can, and an explanation for why, if they couldn't diagnose, they have not told you that in the first place rather than wasting your own and your son's time. Within that, ask them to send by return details of their formal complaints procedure, as you feel that it seems you have been referred to the wrong service and no one within that service has advised you of the fact despite (x number of) appointments and meetings.

All that stuff about 'special panels' and 2 year waiting lists sounds like BS to me. I can't see how there can be a 'panel' to decide if your son is elligible for assessment(?) - either he's not diagnosed and needs to see someone or he is and doesn't. I don't see any way that a 'panel' comes into the equation, and I would ask them, in the strongest terms, to clarify what they mean.

 

Whatever you do as far as CAMHS are concerned do it in writing and make sure that anything they tell you is in writing. If someone phones you 'to save time' say 'lovely - thank you; but now we have saved time can you please confirm everything you've told me in writing, so we've saved time <i>and</i> have a permanent record too.'

 

I know all that sounds a bit of a pain in the bum, but easier in the long term (and less expensive) than getting a private dx which the LEA and ed psych dispute anyway. And if they come back and say, well his dx is ADHD and not ASD then at least you''ve got a firm definition to base any further discussion around.

 

Hope that helps

 

L&P

 

BD <img src="http://www.asd-forum.org.uk/forum/public/style_emoticons/<#EMO_DIR#>/biggrin.gif" style="vertical-align:middle" emoid="" border="0" alt="biggrin.gif" />

i have learned this the hard way they took me in a rrom and told me if i didnt do what they told me to they had power and influence in other companies and will make me do what they want. i am now investing in a mimi recorder i wont be caught out twice!!

[bb1976]

Sorry your right I should have been a bit clearer. We are involved with the local CAMHS but they are dragging their feet like you wouldn't believe to undertake a formal full assessment for Aspergers. The ED Psych is utterly useless I mean totally incompetent and has done nothing to sort this out. I don't know what else to do to get this assessment sorted because I've been told it has to go to a special panel and the waiting list is 2 years!!!!!!!!!!!!!!!!!!! All they keep saying is that he does have very strong Aspergers tendencies blah blah blah, but I can't get anybody to actually do a proper assessment and give me a straight answer.

 

The reason I would like a private assessment is to basically confirm what I already know, which is that he does in fact have Aspergers. That sounds a bit arrogant doesn't it, but my instinct is so strong about this I'm not prepared to wait another 1 year for services to sort themselves out. Believe me I'm more than happy to be proved wrong, but it's so frustrating when I can't get a straight answer from any of the professionals involved.

 

Not sure if that is any clearer lol.

 

Cheers

yorks

can i ask what the symptoms are that your child has as i am being fobbed off also?

[bid]

I advise any one and every one to stay away from camhs they have messed up big time with my son and now to cover there tracks i am being accused of having a personality dissorder and making my son ill they are full of there own importance when actually they know not alot but refuse to send you to someone that can actually help!!!

 

Actually, my son had two fantastic consultants at CAMHS from the age of 6 to 16, who helped all of us hugely, including his siblings.

 

I'm sorry you have had a bad experience, but please don't tell 'everyone' they should stay away from CAMHS!

 

Bid

[Kathryn]

I've had good and bad experiences with our local Camhs so I think I get where both of you are coming from, Bid and BB.

 

My daughter was referred to a Camhs team at age 15 when she had mental health problems- they didn't get AS and it was very frustrating - the child psychotherapist was clearly out of her depth and incapable of supporting us - in fact she used to end up in tears. Then we were referred to the specialist adolescent outreach team and the consultant psychiatrist was fantastic, she would come to our house and spend as long as we needed just talking through stuff - she would persist with my very angry daughter when everyone else gave up, she wrote endless reports for us and she was my life line really.

 

So it depends who you get. BB I'm sorry you're having such a bad experience at the moment.

 

K x

[lindy2017]

Sorry your right I should have been a bit clearer. We are involved with the local CAMHS but they are dragging their feet like you wouldn't believe to undertake a formal full assessment for Aspergers. The ED Psych is utterly useless I mean totally incompetent and has done nothing to sort this out. I don't know what else to do to get this assessment sorted because I've been told it has to go to a special panel and the waiting list is 2 years!!!!!!!!!!!!!!!!!!! All they keep saying is that he does have very strong Aspergers tendencies blah blah blah, but I can't get anybody to actually do a proper assessment and give me a straight answer.

 

The reason I would like a private assessment is to basically confirm what I already know, which is that he does in fact have Aspergers. That sounds a bit arrogant doesn't it, but my instinct is so strong about this I'm not prepared to wait another 1 year for services to sort themselves out. Believe me I'm more than happy to be proved wrong, but it's so frustrating when I can't get a straight answer from any of the professionals involved.

 

Not sure if that is any clearer lol.

 

Cheers

yorks

Hi, My 12 year old son has jsut been dx with aspergers 4 weeks ago it is a reief to know it is aspergers as my 3 older children have traits

and i have always thought he had it......it has taken a year and a half approx ....i dont know about special panel what is that.........dont give up keep asking i dont know did you go to gp because thats where it all started for us and he was a locum and ddint see my son as he was too anxious to go to drs but it turned out well good luck

[Sally44]

I just wanted to clarify that IF you do have to resort to a private diagnosis, even if your LA tries to ignore it, a SEN Tribunal will not.

There is a bit in the Rose Report where it says that they came across certain LAs that did not recognise a diagnosis unless it had come from one of their own professionals [and my LA admits they never assess or diagnose for dyslexia because they believe that 'good teaching' overcomes this difficulty!]. The Rose Report goes on to state that LAs should accept private diagnosis unless they have sound reasons. That might be worth finding.

Usually the reluctant to diagnose is due to the fact that SEN guidance then says that need has to be met. [if you have a Statement that is a legally binding document so they try not to include further diagnoses or difficulties because it means the child may need more funding to support them, and it also demonstrates that they are more complex, which may mean they need a specialist school later on.] So every need has to be identified in section 2 and section 3 has to detail how that need will be met.

 

It might be worth finding out if there is another route to diagnosis other than CAHMS. We were sent to a multi disciplinary team at the childrens hospital which included Speech and Language Therapist, Clinical Psychologist and Developmental Paediatrician. The SALT told us immediately to 'expect' a diagnosis of an ASD because he had a language disorder, echolalia etc that was typical of that. It took a further 18 months before he was finally diagnosed. I'm not sure who you would ask, eg. the GP, Childrens Hospital - Clincial Psychology/Paediatrician, Speech and Language Therapy or Educational Psychology Services.

 

So if there is a 2 year waiting list to see someone, you then have a further period of time before they diagnose.

 

You also need to know that if an independent professional diagnoses, that does not automatically mean they will say what his needs are, or how he should be supported. That would involve a separate assessment using standardised assessments. So if you also want to know HOW he should be supported, and what his strengths and weaknesses are, then talk to the EP about diagnosing and assessing at the same time [if they can do that].

 

If your child is assessed using standardised assessment that will be useful because it gives a baseline measurement from which you can measure progress. LA assessments often don't use them for this very reason. And knowing if he is making progress if crucial because the SEN system is a graduated approach, so if he has not made progress the school need to seek professional advice and they need to either provide more support or use a different approach - whatever is needed, so that he does make progress.

Edited October 17, 2011 by Sally44

[Sally44]

My experience of CAHMS was both good and bad. She was brilliant at seeing what my son's difficulties were and wrote a couple of good letters saying he had dyspraxia, needed a sensory programme and that he had extreme anxiety and piecemeal thinking and that he had been overloaded and overwhelmed on a daily basis in school.

But she had no knowledge of the SEN guidance or law. She seemed to think that whatever she said would happen - and it didn't. She felt that the input could be provided anywhere, when it couldn't. In this respect she was very naive.

She used intensive interaction to get my son out of the house, and then seemed to think the school could use that same technique. The same applies to OT. But mainstream schools do not have TAs trained in these things. She talked about a low arousal environment and being taught in small groups. When the school cannot do that.

I felt she really let my son down with that because she had promised him that she would find out what the problem was and she would make it better for him. So far nothing has changed.

[cmuir]

Hi

 

I've experienced being passed from pillar to post and finding professionals unwilling to actually make a definitive decision which resulted in not being able to access services, etc. I also know of someone else who was in the sameboat with a child in my son's class, who also saw same professionals etc. Persistence is the key. Point out how professionals bang on about early intervention, etc, but in the absence of a thorough assessment you're not being able to access services for your child, which is damaging. I also found that I was unable to function, in that the situation was all consuming – I felt I wasn't being listened to, my son wasn't being assessed, etc and we were getting nowhere despite having 19 reports and being passed continually form pillar to post. More importantly, this was all damaging to my son. In hindsight I can completely understand why it can take time for a child to be assessed as it's usually a team effort i.e. SALT, OT, etc, but there comes a point when everything starts to stack up. It sounds like you're in a similar situation in that CAMHS are saying yes there are AS traits, but no one is actually willing to investigate further. All I can say is persevere! I think in some ways, it's become more and more obvious that my son has AS. It's also worth seaking with the school to identify/acknowledge issues that kiddo has. An Ed Psych should also be appointed. In school, a child should receive help/support with or without a diagnosis (though a label does seem to carry a bit more weight – how much, is another story!).

 

Caroline.