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jelibean
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25 May 2008, 3:13 am

I agree, I think it is very important for parents and adults wishing to be assessed to know whree to go to where they will be understood and treated with kindness. Too many children are being trawled round like hand luggage to numerous clinicians who merely pass them over to someone else OR worse discharge them as they have no clue.

It is really important we see ASC friendly folk. Especially if the parent is on the spectrum too. It can be heartbreaking going over and over the same old same old to get NOTHING.

This is something we all need. A comprehensive list of where to go and who to see.



jelibean
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25 May 2008, 6:10 am

ONE IMPORTANT POINT TO MAKE IS THIS..............

For those of us unfortunate enough to be in the UK, WE HAVE to get a NATIONAL HEALTH SERVICE DIAGNOSIS. Whereas you in the USA go privately we HAVE to go NHS.

IF we choose to go to a private clinican that DIAGNOSIS is not accepted by the NHS and we are still locked out of the system.

There are thousands of parents being referred to CAMS HERE only to find the consultant un empathetic or understanding. They get thrown out and told to go somwhere else...........but where? Pay for it and we are told we have bought a diagnosis and maybe we are so obsessed with something being wrong with our child maybe, just maybe we are all suffering from MSBP!! !! I may add MSBP is totally made up by the now discredited Roy Meadow.

So in the UK we MUST find someone WHO UNDERSTANDS...............AND THAT SADLY IS DIFFICULT when we are FORCED to see someone who only wants to base a diagnosis or NON diagnosis on OPINION and not TESTS!

My advice is for any child to go and see an EDUCATIONAL PYSCH. They will be able to complet tests and then you can present them at a local appointment.

You can in the UK get private EDpysch appointements if you google it and if you can afford it.

The situation is grim here, the national health service is not all it is cracked up to be!! :( :(


ANOTHER CENTRE OF EXCELLENCE IS THE MAUDSELY HOSPITAL IN LONDON.

http://www.slam.nhs.uk/services/service ... r=2&id=372



natesmom
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25 May 2008, 9:30 am

wow, that really stinks. good luck!



jelibean
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25 May 2008, 12:51 pm

Yea you are right the system in the UK is broken and even though we know how to mend it noone listens to us..............we are after all parents.............so what do we know about ASC!??

It is very interesting knowing how each country deals with this enormous problem. We have NOWHERE TO GO, noone to see and even when we do get to see someone, we are passed around OR...................thrown out.

The numbers of children and adults being REFUSED services is huge. That is why it is really important to find folk that understand ASC. The children are fed up with never going on holiday because money is spent on trawling from one end of the country to another visiting professionals. I know one parent who went to Australia just for a diagnosis..............HONESTLY.

So for us here in the UK it is a very very sad picture. The NAS just churn out leaflets and the bosses all travel around lecturing .......................but they don't include ADHD

So now parents are witholding diagnoses of ADHD in favour of autism and aspergers only!!!GRRRRRRRRRRRRRRRRRRRRRRRRRR



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25 May 2008, 8:53 pm

I have had experience with the Judevine in Missouri and believe me it wasn't pleasant :( So anyone who has a child along the high-functioning/aspergers level of the autism spectrum - you won't get a diagnosis from Judevine. I already had a diagnosis from the Autism Clinic in Columbia, MO and Judevine still tried to tell me my son wasn't autistic :? I did give Judevine the documentation from the Autism Clinic (he had been diagnosed by the director of genetics there) and they reluctantly agreed to give us services. However, the woman they sent to my house was terrible and I felt I was doing better on my own WITHOUT her (lack of) help. That is just my own opinion though.
Dawn



mom2bax
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26 May 2008, 12:10 am

well in canada we have universal health care so i don't think we have a private option.
i was sent by my pediatrician, after voicing some concerns to the Child Guidance Clinic in winnipeg , and it took around 6 months to get an appointment for diagnosis, after the diagnosis i was able to get one program which was observed play with my son (3 or 4 one hour sessions)to fill in the gap because the wait for additional services is 1- 1 1/2 y. and my guess would be that he would get bumped down the list for those with more severe cases.
although in my letter of diagnosis they said theywould contact me shortly or something like that for some of the additional services. and i haven't heard back and his dx was in October of 2007.
any other winnipegers or canadians???



Doris50
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26 May 2008, 4:37 pm

Somebody posted earlier asking for New Zealand based Clinicians. NZ is way behind the rest of the world in understanding ASD. We went through the public health system and were left high and dry. So a few people including our OT told us about Dr Ruth Baker who is a Woman with Aspergers herself. She runs Autism Consultancy Services based in Christchurch. We went to her and received a diagnosis for our son of Aspergers. Now some people are skeptical of her diagnosis, because she is not a Psychologist etc. This includes our school principal and the public health system. But who better to understand ASD than somebody who experiences this and is able to empathise and relate?



jelibean
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26 May 2008, 5:11 pm

Wonderful response guys!! Well done, so far we have made contact with NZ, Australia, Canada and USA + UK.

There is no WORLD listing anywhere on the net so this is going to prove very valuable to many many folks who are just starting out on the rainbow of the spectrum.

Let's try and make it a friendlier place to be instead of the lonely place that so often it can be, I maintain the best clinicians are the ones who LIVE ASC, paper qualifications are all well and good but life experience of the spectrum is essential in my mind.

Here in the UK Child and Mental Health teams control our lives. Many of the Paediatricians we get our children referred to are COMMUNITY PAEDIATRICIANS............quite a different thing from a DEVELOPMENTAL paediatrician! Community paeds are CHILD PROTECTION..........why are we being sent there? THE FAMILY COURTS IN THE UK ARE RIPPING CHILDREN out of their parents arms because they are being blamed.

Once in the system we get lost. THE UK IS TERRIBLE , especially for the HIGH IQ's

So whilst we are at it pointing out the good places to go we must also make folk aware of the pitfalls that may befall them.

The National Autistic Society is about as much use as chocolate T.Pot in my opinion!! , they give out leaflets which if in date can be useful but to be honest they pick and choose who they help and who they don't. I certainly have had NO help from them despite my asking. All I got was kicked in the teeth by a woman who thought she was royalty and actually had no clue of anything she was talking about! Sadly she remains and causes havoc. Typically on the spectrum herself but refusing to believe it!!

So the picture is not looking great for many parents and even more children. We must be able to know where to go and who to see. SEEING the wrong person can cause more damage than good and sadly here in the UK it often does. :(



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27 May 2008, 9:09 am

mom2bax wrote:
well in canada we have universal health care so i don't think we have a private option.
i was sent by my pediatrician, after voicing some concerns to the Child Guidance Clinic in winnipeg , and it took around 6 months to get an appointment for diagnosis, after the diagnosis i was able to get one program which was observed play with my son (3 or 4 one hour sessions)to fill in the gap because the wait for additional services is 1- 1 1/2 y. and my guess would be that he would get bumped down the list for those with more severe cases.
although in my letter of diagnosis they said theywould contact me shortly or something like that for some of the additional services. and i haven't heard back and his dx was in October of 2007.
any other winnipegers or canadians???


Hi mom2bax, we're also in Winnipeg and there are private options. Both the pediatrician and the school recommended paying for a private assessment if we wanted the best (most thorough) evaluation, done in a timely fashion (so much for universal health care :roll: ). We went with Red Ladder Optimized Learning, which is a private practice psychology centre. (google red ladder Winnipeg and you'll find their site). We were really happy with the services we received there. We got in to see them within 3 weeks, and after our initial phone interview, were assigned to a person who specializes in Asperger's. The whole thing has been very expensive (10-15 hours of evaluation per child at $150 per hour), but they do very thorough testing and interviews, and we come away with a diagnosis and a full report on their learning styles/ strengths and weaknesses etc.,with all sorts of recommendations for facilitating their learning at school. My husband's work insurance will cover a large portion of the cost. I would highly recommend Red Ladder to anyone needing an assessment.

The next step for us is an OT assessment. Both of my sons are on the waiting list at school to see the occupational therapist, but again everyone is recommending that we see a private OT if we can afford it. The resource teacher at school said that the wait there is really long and that the services provided once you do get in, are minimal. We have no coverage for OT, so I'm not sure what we will do.



squidmother
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02 Jun 2008, 3:56 am

what a valuable commentary
If you're in Melbourne OZ & can live through the waiting list then
consultant psychologist heather mitchem hawthorn was excellent
Paediatrician bronwyn cathels was also helpful through either royal childrens hosp or privately
good luck



jelibean
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02 Jun 2008, 5:39 pm

Thank you squidmother! This is going to be a little goldmine of a thread for anyone who is struggling as to know where to go!

I would like to add that there are many bad practitioners as well ya know!! ! What a SURPRISE!

And saying that I thought you may wish to see this article that appeared in a national newspaper today......................maybe you wish to comment? Jackie Jackson is a great girl who I am delighted to say is starting to name and shame certain practices here in the UK!!

Sneak a peak!
http://www.dailymail.co.uk:80/health/ar ... ldren.html :wink:



Saffy
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17 Sep 2008, 6:18 am

I would like to add.

Vera Hayward Child Development Centre
Otago District Health Board
Private Bag 1921
Dunedin
(request a general assessment via your GP)

Phone 474 0999

Also Paediatrician
Dr John Clarkson - also available through the Dunedin Hospital ( knows his stuff and was instrumental in the ASD guidelines/strategy for NZ )

Just a comment on NZ services.. I do not think NZ is miles behind the rest of the world. In fact I think the opposite is true in many cases. New Zealand won the Roosevelt International Disability Award at the end of last year and has some very competent clinicians. We also have people like Sue Larkey and Tony Attwood speaking in NZ on a regular basis so there are many many opportunities for those people that are interested in ASD to increase their skills and knowledge. The last set of speakers that I listened to from the US to speak in NZ and teach a professional group .. quite frankly I was appalled at their lack of knowledge and their approaches, they were telling us things that we had worked out Looooooong ago ( as in years ) as if it was fresh and exciting information.
If the person that made the comment had a poor experience I am very sorry .. but there are many skilled professionals out there as well. I think your comment was unwarranted. As everywhere .. you will find people that are competent and people that are not.. hence this thread.



Doris50
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25 Sep 2008, 8:44 pm

To the previous kiwi. That's great you've had such a positive experience. All I can say is you are lucky you don't live in Cristchurch, because the CDHB proved to be a very negative experience for us. As it was for a number of families I met through the Autism NZ Help course.



ajpmom
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12 Oct 2008, 12:07 am

I would recommed Dr. Michael Chez with the Sutter Neurosciences Group in Sacramento, CA.

Both my boys see him and he is very good. He is also associated with the M.I.N.D. Institute at UC Davis.



jelibean
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12 Oct 2008, 9:17 am

ajpmom wrote:
I would recommed Dr. Michael Chez with the Sutter Neurosciences Group in Sacramento, CA.

Both my boys see him and he is very good. He is also associated with the M.I.N.D. Institute at UC Davis.


Brilliant!! I have two mums in CA who are desperate, that is really useful. I knew this thread was going to be a goldmine!!

For anyone in Cornwall England.........................Dr John Doe, St Austell, Sedgemoor Centre. Consultant Child Psychiatrist who knows his stuff and is VERY NICE and gentle with both parents and children!

Many thanks for everyones's contribution. Come on the rest of the world, wherever you are and if you are happy or UNHAPPY then this is the place!!

Great work everyone. Keep it up. I don't think there is anywhere else on the net that has this very valuable information.

To all those who are not sure, try the AQ test on line. Google in Prof Simon Baron Cohen AQ TEST. It is not DIAGNOSTIC but will give an idea! It is free!

xx :D



Emen
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18 Oct 2008, 2:28 pm

Hi there,
This topic is is a great idea.
I'm in New Zealand and can't recommend any clinicians personally.

It may be of interest to fellow kiwis though, that I recently went to an education conference where a very well known (in NZ) Kiwi clinical psychologist, Nigel Latta, was speaking.
To paraphrase - he said he wouldn't dream of diagnosing ASD because he didn't know enough about it, yet there were people out there who knew a lot less than him and who were diagnosing it all the time. He also said that there were only a couple of people in NZ competent to diagnose ASD. So kiwis beware.
As well, he said that psychological testing was a waste of time for ASD and that all that was needed for a diagnosis was an assessment by an Educational psych. and a neuropsychologist. Interesting eh?