Private Psychologist

[JenRose]

We have been in touch with NAS, have told them of our situation with M having "autistic traits but no dx"

They gave us the name of our local ASD specialist but i already know that he has a waiting list of up to 12months.

We asked for the name of a private psychologist and they have supplied us with one.

 

The thing that is confusing me is that ive heard of people paying for their child to have a private assessment/dx done and the LA not accepting the information.

 

This psych is acredited by the NAS and seems to be pretty good, M is still receiving imput from clinical psychology, this is confusing as well, i thought that CAMHS were supposed to help with behavioural problems but they have referred him back to clinical psychology for behavioural stratagies, Clinical psych was convinced that M was AS/HFA and told me that she watched the Jacqui Jackson drama and that the eldest son Luke kept reminding her of my son!!!

 

She was very surprised when CAMHS said no to ASD based on the ADOS.

 

We really dont know what to do, do we wait yet another year for us to see a specialist or do we see this private one and run the risk of LA not agreeing with what he says- if he does say that it is AS/HFA.

 

Sorry to ramble on , i cant sleep at the moment for wondering what to do and would really appreciate some advice.

 

Thanks

[zaman]

I found myself in a similar stiuation last year, and my (v sympathetic GP) recoemmended against a private psychologist on the basis that I was taking myself out of the loop, and it would be virtually impossible to get back into it. So we asked for a referral elsewehere for a second opinion, which the GP did for us (this is your right). We were told that the waiting list at the clinic we were then referred to was a year (it was to a see a leading autism specialist), so I phoned the clinic up every few weeks to see how things were going. Whoch paid off becuase when a cancellation came through, we were the first ones the administrator thought of, and were seen within a few months of asking for the referral.

 

This time the assessment was done in a really thorough way, and everything explained to me. They also recommended strategies at the end, and will be going into school next term to follow through.

[JenRose]

Thanks zaman for that.

[Kathryn]

Hi Jen Rose,

 

My daughter was dx privately because we didn't want to wait for a referral.

 

If the choice is between waiting a year and seeing a private psych sooner, if it were me, I would take the private option, especially as you've taken the trouble to find someone with good credentials.

 

If a firm dx is the result, it will set your mind at rest, get you out of this limbo and give you a clear idea of what to do next in terms of getting help. I understand your worries about the LEA not accepting the findings, but to be honest, it's impossible to guess at this stage what your LEA will do. You will very likely still have a battle on your hands to convince them your child needs help and the more ammunition you have, the better.

 

K

[jen]

Choose and book in now becoming popular so if you are prepared to travel you can be seen sooner.

 

It might be benefical to see one that does private and nhs work as he could do the assessement privately and then continue seeing your child through the NHS.

 

We did not wait long for ours and I was willing to wait because she was a good psy.

 

Ask for a second opinion and see what the waiting list is then you can decide which one to go for.

 

We have an NHS diagnosis for ASD and a private one for Sensory Integration Dysfunction because there was no one specialised in the NHS to carry out the diagnosis. The LEA put the ASD on to our childs statement but we are still fighting for the Sensory diagnosis to go on even through there were only 4 week difference in the diagnosis. We are going to tribunal to get the sensory one put on. The NHS has referred our child to NHS OT to get there opinion but as I have said there is no one still within the NHS that has the skill to diagnose and treat these children.

 

Jen

[jen]

The last sentence should say the LEA referred our son to the NHS OT for assessment for Sensory

 

Jen

[mum22boys]

Just wondered have you asked the school if they will accept a private diagnosis. We are in the long wait with the NHS and have considered the private route but the school will not accept it. It has to be a NHS one.

 

mum22boys

[Kazzen161]

The LEA's argue that if you pay someone enough, they will say what you want them to say!

 

The clinical psychologist is probably part of CAMHS - they include psychiatrists, psychologists and even specialist nurses. The psychologists tend to do the behaviour management stuff, the psychiatrists the dx/meds.

 

How important is it for your child to have a dx at this time? Will it make any difference to the help he gets? Will he be changing schools soon (and might need an ASD specialist school)?

 

Karen

[Hectorshouse]

We went the private dx route after being put on a waiting list that was 18months to 3 years for initial appointment.

 

Having the private dx didn't have any diverse affect, problem we had was that even with dx our LEA at the time didn't recognise AS as a special need or even a condition. Fortunately things have changed since then.

 

Having the private dx gave us more weight and helped spur on the input from the LEA's EP's etc ... LEA's will argue that if you have paid then they will tell you what you want to hear, but this is simply a cop out, if you went private for a dx for (this is an example only and I don't mean to offend anyone) say suspected cancer and the waiting list for assessment was too long and you had the money you would go private and the specialists would accept this dx. A professional EP or CP whether private or not is a member of an acredited body, they do not simply supply dx to fit the needs of the parents, it is the child they assess.

 

Most private EPs CPs etc are usually working for the NHS anyway as well.

 

Also, another route you might consider is going for a BIBIC assessment, there is a waiting list for this and it does cost, but there are bursarys available to the less well off, it is a very thorough assessment, we haven't done it but I have several friends that have and have said it was the most comprehensive and supportive assessment they have had. I haven't got a link but if you google BIBIC it will come up, don't be put off by the name, they regulary assess children on the spectrum or suspected as being on the spectrum, they cover everything, diet, behaviour, education etc ... and give you programmes to help with follow ups and outreach support.

 

HHxx

Edited March 6, 2006 by Hectorshouse

[JenRose]

Thankyou for your replies.

After much thinking and searching over the weekend we have decided that we will have M assessed by a private psychologist.

 

Dont know what to say to CAMHS psychologist this afternoon though, anyone any ideas?

[lisa]

Don't cancel any NHS appointments to go totally private. Let them run alongside. I had both of my AS kids privately diagnosed. They were both already in the system and seeing SALT who had in both cases initially spoke of AS and actually asked us if we had health insurance because there was such a long wait to see a consultant in our area. Choose carefully who assesses your child. We phoned Dr Gillian Baird's secretary to ask if Dr Baird saw patients privately, she didn't but recommended a paediatrician who was very well respected and experienced with ASD. Our LEA have never challenged the diagnosis. This fast tracked us through the system quite a bit.

 

I'm absolutely positive that the school can't ignore a private report. They have no right whatsoever to say they will only recognise an NHS diagnosis, I'm sure this must be illegal. If you got a private diagnosis and they did refuse to accept it you could take it to the DRC.

 

Lisa

[lisa]

James

 

The price totally depends on who you see and how much time they spend assessing. We've had quite a few private assessments. Here's an example of the prices we paid:

 

L's diagnosis was - Joint paediatrician and clinical psychologist - all day, very through assessment from

9am-5pm -?1620.

 

SALT assessment - ?400

 

OT assessment - (1 1/2 hrs - ?175)

 

Educational Psychologist (3 hr assessment)- ?300

 

Clinical Psychologist (2 1/2 hr assessment + very detailed 13 pg report!!) - ?500

 

Lisa

[JenRose]

The one that we are going with charges ?400 and that includes a detailed assessment,followup meeting a meeting if needed with school etc and a very detailed report.

He works for NHS,Government,and lectures professionals on ASD,s, however he is quite local to us so maybe that is reflected in the price, he comes highly recommended by the NAS as well.

[jen]

you could always get a private assessment and still wait on the NHS for a second opinion that way you keep all doors open and probable have piece of mind.

 

 

As I have said before our LEA did not recognise our private OT diagnosis even though the ed psy sss and school all agreed with the private OT. We are going to appeal in June but its takes 12 months from asking for the statement to be changed, getting the finalised statement, applying to SENDIST getting an agreeable date and then the cost of going to tribunal and all the inconvenience and mental exhaustion. But at least we will get a fair trial on the day.

 

Jen

[florrie]

I had to use private assessments twice to get recognition, the first time 10 years ago when my son was struggling and had language difficulties, and distress we had terrible difficulties getting anyone to take any of it seriously, the school said they had run tests and found nothing wrong, we thought it might be autism but gp said definitely not and in the meantime i had gone to aphasic and got the name of speech and language therapist or pathologist, who also worked in research and she dx semantic pragmatic disorder which at the time i had no idea what that was, eventually he had a breakdown of sorts and got sent to paedatrician who thankfully luckily straight away knew it was asd from the descripcriptions and history and semantic pragmatic dx and I believe it was just luck and he may never have got dx if it hadn't been for her because i didn't know any of this stuff then, god I was so relieved to have someone take it seriously because I was so distressed for him. We were also lucky enough to have psychologist doing research in aspergers syndrome and jake got thorough asssessment as a result of this who was very kind and sympathetic which was a relief, however through this I realised i might also be on the spectrum, but I also had to go privately to get this confirmed.

 

Sadly I don't have much faith in the nhs and apart from the wonderful paedatrician and psychologist we had there aren't many people in the nhs like that, the rest of them were horrible and made things worse.

[JenRose]

Well, we have decided to go private and i contacted the psychologist yesterday.

He was really nice and immediatley put me at ease particularly when i said that i was sorry if any of my remarks are blunt as i have AS, he said You wont offend me at all, its one of the perks of being AS that you can be blunt and i have had over 30years experience working with people on the Autistic Spectrum so dont worry!

When i told him that CAMHS have told us that they want us to go on a parenting course he said "oh and thats going to magic away all M,s problems is it"?

He said that M hasnt had the full asessment as noone has observed him outside of the clinic setting and that its disgusting that they are ruling ASD out without doing this.

He told me that parents are rarely wrong when it comes to their children but if he thinks that we are barking up the wrong tree he will say so.

I said GOOD, tell it to me straight thats the best language that i understand

 

He has sent us a very detailed questionaire to fill in and he is coming to meet with us and M around Easter and then when he,s "Had a look at the young fella" he will decide what asessments he thinks M will need, he also said rubbish to us having to make M do school worksheets for a few hours a day as M could well have a problem with getting his ideas onto paper as a lot of kids with AS do, he said you teach him the way you know works.

 

Feel so much better now, hopefully we will be getting somewhere with this psychologist.

[jen]

Its essential that any one who asseses your child sees him and obtain reports on the child in different situations. This way they can get a detailed assessment and hence get an accurate diagnosis

 

Jen

[Kathryn]

JenRose, I like the sound of this psychologist - I hope the assessment goes well.

 

K

[JenRose]

Thanks, i have been feeling better today, the other day i felt like a cr*p mother who obviously wasnt doing something right, but i dont feel like this now, and whatever it is that M has, it might not be ASD, im sure that this pychologist will get to the bottom of it and not just blame us.

[Tez]

Glad you're feeling better. I also hope the assessment goes well.

[florrie]

This psychologist sounds more positive and hopefully can help you, hope everything goes well for you