Private assessment, report is in and it is a load of crap!!! calm me down please

[peekabooby]

As I have posted previously we took ds 7 for private assesment (Dec) as the waiting list for ADOS is so long in our area. In the mean time we found out that the multi disciplinary panel had given AS dx.

This morning the report (private) finally arrived nine weeks after app. I am totally gutted that I have paid a lot of money for what is essentially a load of crap and rather than getting ds help is going to stop him getting any support.

At the app we were verbally told that he was giving a dx of Autism, I am not confused as I was actually surprised that it wasn't AS so I questioned why Autism not AS and was told it was due to speech delay.

The report actually states "I am sure that he has AS but I think there is substantial likelihood that his developmental difficulties will improve and perhaps even resolve with age" Does this sound as if he is saying he will grow out of it, rather than learn to cope.

The second page is even worse there is a list things that were on a questionnaire, it was difficult to complete as it was aimed at an adult not a child and so the answers to circle were not appropriate. So there are 31 points that state: His had used stock phrases in a peculiar way but this has now stopped, he has been frequently been upset by certain sounds but this has now stopped, he had food fads but this has now stopped and the list goes on like that and NONE of them have stopped.

One of the points doesn't even make sense: He frequently had problems remembering appointments but this has now stopped. I would have wrote N/A.

The final page is mainly taken up with details of his siblings and dh and my jobs with a small paragraph focusing on ds.

I am totally gutted to have spent money that we could ill afford on this shoddy report. it has been copied to our GP and school know we have been and are waiting for a copy as is the Autism outreach, I just feel this is going to have the opposite affect of our aims which was to get him some support.

I haven't been able to get in touch with his secretary, out of office until tomorrow. I did a lot of research before choosing this person as I though his report would carry some weight.....I am screwed now.

Hi. A few things come to mind. Have you had a Report from the Multi-disciplinary Team yet. Did they give a definite dx, or was it dependant on the ADOS,or further testing?
If you have their Report, you can use this to give to school,Autism Outreach etc,and hopefully get support for your ds this way.
Definitely get back to whoever wrote the Private Report. He should not have Cc the report to anyone until you had a chance to read it, digest it, and check for any inaccuries.
The Questionnaire part of the Report, sounds a bit iffy. Why has he given you a questionnaire suitable for an adult, and not a dc? Surely this would skew the results?
You have paid good money for this Report. Send it back, with your comments, and ask to see the Draft, before he sends it to anyone else.
Don't say anything to the school etc re Private Report at the moment.If they ask, make something up,ie, the Assessor has been ill, or he needs to see your ds again to clarify a few things, just to give you time to get the Report better and more accurately written.
Give yourself a few days, then start again. HTH.

Who was your private assessment with? Was it a child mental health consultant or a private clinical educational psych? The latter would not be permitted to formally dx. It sounds as if this report doesn't offer a formal dx of any sort and is completely inaccurate. You absolutely must question the questionnaire results and point out it is completely inaccurate and ask for an explanation I would ask for a copy of this. I would ask to meet to go over the report in person.

Thanks for your reply, I just need to rant feel so crappy.

I haven't had report from multi disc team, what happened was, we had paed app last week, I told paed that we had gone for private dx as I wasn't prepared to wait another two years in limbo waiting for ADOS. He replied that he had given dx of AS at the last app in July, he had asked what I though and I said AS he said I agree. He put this in report but I didn't take as full dx as I thought we had to wait for ADOS. In the recent report he said the ADOS wasn't always necessary if all proffs are in agreement.

I then contacted Autism Outreach because previously she has said when we get the report he would get the next level of support. I told her we had NHS dx, to which she replied that yes she knew as she sat on the multi disc panel and it was decided in Nov. I have recieved nothing in written form other than paed report from July.

I know I can get him to change the second page because it is totally factually incorrect, but his opinion that "it will resolve with age" fgs he is getting more and more obvious as he gets older, he doesn't even want to go out of the house apart from school.

My head is in bits tbh,

It was a private clinical pyschiatrist who specialises in Autism/Aspergers.

In the recent report he said the ADOS wasn't always necessary if all proffs are in agreement.

should read at the recent appointment.

tell them you aren't happy with the wording as it isn't helpful and ask them to rewrite it.

Do you know who Chaired the Multi-disciplinary Meeting? Usually, whoever chairs, puts together the Report.So, if you know, e-mail them or telephone, and explain, that the Team sat in November,gave your ds a dx of AS, but you have heard nothing, and would like a copy of the Report from this meeting asap.
If you don't know, ring your ds Peads Secretary, and ask Pead, who it was, and could he chase copy of Report up for you.
I agree with poster who said get Psych. to re-word Report. He has used clumsy phrasing, and even if he didn't mean your ds would grow out of his difficulties, that is what could be inferred from it. He may have meant, that with time and maturity, your ds could learn how to manage his difficulties better- alonger sentence, but it makes a big difference in how it comes across.

Thanks Bigpants will get onto that tomorrow :)

Peek

Bigpants is right. You should have seen the report before it was circulated to others.

Don't forget - thisis one person's opinion. It's not gospel.

Ok, so your GP has a copy but you don't need to supply copies to anyone else. It's up to you who you share it with.

If it's that crap you're entitled to rip it up!!

I would not worry about the suggestion that your child will improve. I would be surprised if he didn't once proper support is in place.

Defintely get the inaccuracies corrected.

And then file it away.

Contact the NHS Paed and ask for a written assessment of your child's difficulties, their opinion as to what the cause is (i.e. the dx) and their suggestions of what support / therapies etc are needed.

I am not understanding this either Poor working memory leading to difficulties in remembering written instructions......should that be verbal instructions?

Its just the way its worded, I want nothing more for him to be happy & successful in life and I don't doubt he will (especially after reading post about finelad :) ).

If it read, with strategies and support in place there is every likelihood that littlebooby will lead an independent life, then I would be chuffed. Resolve with age.......I have never seen one single poster who said "don't worry mn's don't bother with therapies, age is all it takes.

I thought ASD were a lifelong condition, resolve with age sounds like cure to me.

I think certain aspects do improve with age and maturity as this is a developmental disorder and there can be a lag but it is usually made good with support as the child ages.

I understand completely what it feels like to get reports which seem to be dismissive and which appear to judge your child unfairly.

I think you need politely but firmly to point out the way you feel and ask for a proper discussion about it.