Back to square one.....

[devilot]

Hello everyone, I posted here for advice re my son a couple of months go, the main worry was that he has a great imagination which was hindering his dx of AS, my last post is here if anyone wants a reminder.

 

Well after the great advice I was given, I puchased a copy of Tony Attwood's Guide for Parents and Professionals, and was able to go to our next appointment armed with everything I had been told (careful to point out 'don't for one minute think i'm telling you how to do your job, but....' ) To her credit, the psych listened and took it on board, she also said that the more she saw DS, the more AS like 'signs' she could see in him, one in particular was that he lacked the ability to read subtle body language such as when someone is getting bored in a conversation, DS will just carry on talking and talking (sure that sounds familiar!). She said her colleague had written a handout on how to make life easier for AS children and gave it to me briefly to look out but wanted to check with her colleague before giving me a copy as this had been written for someone in particular. She also said that she would get said colleague to sit in on our next appointment to see what she made of him.

 

Fast forward a few weeks after endless phonecalls from me trying to chase it up and it turned out we were to have an appointment with this colleague on our own.

 

I didn't like her much to be honest. I found her brash and very much liking the sound of her own voice, she seemed to spend half of the appt trying to bring up Google to show DS different things on the internet! I understand she wanted to make him feel comfortable but I would have preferred the focus to be on talking. Also, at the end of the appointment, DS said something silly about a picture on the wall and she boomed 'DO YOU HAVE A BRAIN?? I MEAN, DO YOU THINK? DO YOU THINK!' She was meant to be joking but I found it a bit worrying as I could see by DS' face that he sort of thought she was joking but couldn't be quite sure, and i'm not sure it was the brightest thing to say to a child who presents with low self esteem and the habit of taking things literally.

 

She basically said that she wasn't seeing ANY signs of AS and ended it with a sarcastic 'sorry!' like thats all I care about - I have always said its not about the label but the help he can receive at school, and if it takes a label to do that, then so be it. Regarding his humming and throat/nose clearing she said that they had to figure out whether they were a habit or a problem....well I would guess if you were being singled out for doing them and can't stop or know whether you are doing it, its a problem, right?

 

I think (but am not sure) she was referring us back to the original psych, who is to continue work on the anxiety side of it. She also practised with DS something called Emotional Freedom Techniques and gave me this website to look at (www.emofree.com). Apparently we are to do this every night and suddenly DS will stop being scared of anything and everything. Forgive me if I sound sceptical!

 

The person we saw, I don't want to name her but suffice to say she has a website xxxxxx.com where she produces a weblog and charges parents �3000!! to have up to 10 questions about your child answered in the space of a year, the first psych we saw is also on this 'team'

 

I honestly do not know what to do next and for the best. I actually thought last appointment we were finally getting somewhere, now I just feel the door has been shut in our face again, and I have been labelled a paranoid mother, desperate for their to be something wrong with their child.

 

 

Hi.I have Edited out the web site name in line with Forum rules because it is a profit making venture by an individual professional.Karen.

Edited April 18, 2008 by Karen A

[Karen A]

Hi devilot.I have read through your post and wanted to check something.

 

Are the professionals you spoke to working in a private capacity or did you see them through Camhs or CDT ?

I have been around on the Forum for some time and have read fairly widely.I have not come across Emotional Freedom Techniques as a form of support or intervention for ASD.

Our family also recieve support from Camhs from various professionals.

Emotional Freedom Techniques are not a form of intervention used within Camhs either as far as I am aware.

 

I think it would be worth going back to your GP and asking for a referal to the team within your area who do the assessments for possible ASD...it may well be the Child Development Team...but I am not certain because I do not know the age of your child.

If the psches you mention are the people who do the assessments for ASD then I will have to think about what else you can do...or others here may have ideas.

If anyone here has come across Emotional Freedom Techniques and found them useful I am willing to be corrected. Karen.

[Karen A]

Hi again Devilot.Just to say I have deleted the double post for you. Karen.

[devilot]

Hi devilot.I have read through your post and wanted to check something.

 

Are the professionals you spoke to working in a private capacity or did you see them through Camhs or CDT ?

I have been around on the Forum for some time and have read fairly widely.I have not come across Emotional Freedom Techniques as a form of support or intervention for ASD.

Our family also recieve support from Camhs from various professionals.

Emotional Freedom Techniques are not a form of intervention used within Camhs either as far as I am aware.

 

I think it would be worth going back to your GP and asking for a referal to the team within your area who do the assessments for possible ASD...it may well be the Child Development Team...but I am not certain because I do not know the age of your child.

If the psches you mention are the people who do the assessments for ASD then I will have to think about what else you can do...or others here may have ideas.

If anyone here has come across Emotional Freedom Techniques and found them useful I am willing to be corrected. Karen.

 

Hi Karen, thanks for your reply.

 

I got this referral by first going to GP, explaining briefly DS' problems and then had a referral through CAHMS. I'm not sure whether they are the specialists in ASD, the first one did not seem to be so but made out the second person we saw was?

 

I think the issue is they do not see DS as having an ASD maybe - therefore the EMT has been recommended.

 

I was wondering, if they are so intent on him not having an AS, whether to push for a referral to an educational psychologist, who will assess his needs at school an further 'pad out' his IEP to get him on an even keel there. DS is almost 9 by the way if that helps.

 

I just do not know what to do for the best.

Edited April 18, 2008 by devilot

[devilot]

Also, just to add, agree with you 100% about editing the website name out, I wanted to post it as I was agasht that a so-called 'professional' could charge so much for providing email support!

[Karen A]

Also, just to add, agree with you 100% about editing the website name out, I wanted to post it as I was agasht that a so-called 'professional' could charge so much for providing email support!

 

Yes I can fully understand your feelings.I hope that by just Editing the name I left enough to keep the point you were making clear enough. Karen.

[baddad]

Hi Devilot - I've just 'skimmed' this post (pushed for time) but had the same concerns as Karen about the 2nd person you were referred to... Not questioning her abilities or anything like that (wouldn't know), but it does seem as though the support she offers is on a commercial basis, and with that in mind even the referral to her seems ill advised if that wasn't fully explained, regardless of the 1st consutants assessment of her abilities. I think it would be worthwhile to clarify that point with the initial consultant(?)

 

I've never heard of EMT, but had a quick look at the website you quoted and even though that offers an 'introduction to the technique' for free it too is a commercial service, and the person offering the service (on that site at least) is not a qualified medical practitioner. There's also a hefty disclaimer at the bottom of the page about this being an 'experimental technique' etc... it seems to be a spin off from 'life coaching'...

 

Hope that helps

 

[Kazzen161]

My son was shown how to do EFT by an autism outreach person. I have done it myself, and did find it helpful, but it is a bit "new-age" and my son said it was "batty"!

 

It is sort of re-programming/NLP/affirmations.

 

I think it would help if you were shy, but it doesn't actually teach you any social skills.

[devilot]

Just an update: We had a letter through yesterday saying we had another appointment with first psychy on 13th May. Any ideas what to bring up? Anyone think it would be worth pushing for an assessment by the Educational Psychologist?

[Karen A]

Just an update: We had a letter through yesterday saying we had another appointment with first psychy on 13th May. Any ideas what to bring up? Anyone think it would be worth pushing for an assessment by the Educational Psychologist?

 

Hi Devilot.You could try pushing for an assessment by the EP.It will be helpful if your DS needs or is likely to need help in school.

It is worth bearing in mind though that the EP may well not be able to provide an AS diagnosis because it is not usually within the remit of the EP to diagnose and the EP may not be qualified to diagnose.EPs may well provide input to an assessment as part of a team but they do not usually Diagnose indepenently....especially where the individual is a child.So it may still be worth exploring options regarding an Assessment by the team in your area with responsibility for AS diagnosis in children.

If you find that it is the responsibility of the psychiatrist you originally posted about then there are a couple of options you could look into.

One would be to request that your GP asks a different consultant to provide a second opinion.The second would be to ask the psychiatrist to refer you to the regional team who provide Assessments for AS in more complex cases.

It would certainly worth being very clear at the next appointment regarding your wish to have a full assessment for AS carried out for your child .

 

As BD stated in his earlier post you would also be perfectly entitled to ask some questions regarding the Psyche and her colleague promoting commercial services they are involved in without a full explanation if they are seeing your family as NHS clients.

 

If the psychiatrists are reluctant to advocate further assessment with regards to ASD then it would be worth asking some questions regarding their reasons.

You could also ask for a clear opinion regarding what type of support they anticipate providing.

Basically it is to some extent the doctors decision whether to do further assessments....but you should be provided with an explanation regarding the reasons behind the decision.You should also be given an explanation regarding support and input that will be provided.If you have that information then you could if you wish think about the options regarding a second opinion outlined above.Karen.