diagnosis problems

[ksasnic]

Well thats it ! I am now totally fed up, the system stinks.

 

Since my son started out on this uphill battle for help in 2001/2 he has been told by several specialists, clinical psychologists, speech therapists, etc telling me he definately fits the criteria for AS and as far as some are concerned he has it - at least that big hairy spider now had a name. finally the appointment comes for his multidisciplinary meeting last friday.. we turn up not knowing what to expect, Nick actually on a very good day... a little quiet but that was as expected going to a new place for the first time and meeting 2 total strangers. We sit in a room for the first 15mins before Nick is taken out to be with the specialist speech and language person whilst I am sat with the clinical psychologist who has a check list of 3 main areas which he proceeds to work his way down mainly asking about his communication skills I answer them and also add extra information whilst I could but not enough as I had liked.. All goes relatively well except I leave feeling as if there should have been more to it and I should have said a lot more but then they did discuss another appointment so I thought I would be able to add extra then..

 

Oh how wrong was I turn up (today)this time without Nick and am taken into a room with not just the specialist ( a really nice man) but the speech and language person and the clinical psychologist and 2 other people I had never met before and the way the seating was set out I felt like I was on trial ! Then things went from bad to worse the clinical psychologist rattled off his findings some good but still not away from his communication skills then the speech therapist did hers and then the specialist said that on their findings Nick wasn't on the spectrum at all and that he just had communication and speech and learning difficulties... I was GOBSMACKED !!! They based the diagnosis on 1 session where the clinical psychologist spent all of 10 - 15 mins at the beginning of the session not talking to Nick though just telling me what to expect from the meeting !! All those other specialists were apparently all wrong now ??? The speech and language person just based his session on the speech and language problems... I couldn't believe it.. I came away very upset but on my leaving the building the nice receptionist saw I was upset and took me into a side room and handed me a box of tissues asked whether I'd like a cup of tea or coffee then another lady came in and sat a while before a very nice nurse came in and said I can only offer you a hot drink a box of tissues and a hug... that was it I burst into tears and the hug was very appreciated.

 

So now when the letter comes telling me exactly what they think Nick has then I am going to go back and see the specialist and ask him whats really going on.. Why for 4 years we are told he has aspergers by various professionals who have seen him on more than 1 occasion then suddenly he hasn't got it by some clinical psychologist who didn't even spend 5 mins alone with Nick !!!! was it a mis-diagnosis before ????

 

Is it about funding all of a sudden the funding has reached max? or is it that because he is not so obvious they decide to sideline him ? maybe he only scored 4out of 10 on the aspie checklist and so they'll say there is no problem ?

 

I am so which bit of setting fire to the kitchen is because he has a speech problem, which bit of not liking labels on his skin is caused by speech or language or communication difficulties, which bit of hating having his hair cut or lining up cars in rows or of eating his food in a particular way, richocheting of the furniture to burn of endless energy has anything to do with language ???????? which bit of running out into the road because he has seen something he likes.... the list goes on.....

 

He never tells me he is sick unless I notice that something is up then he just gestures with his hand as we have taught him to do when asked... He will never say it first.. he just doesn't put the 2 together he still bounces of the furniture at 100mph even with a 40degree temperature !! There is no connection. Its like his memory keeps jumping as things he has been told one second he has forgotten especially if it isn't anything of interest to him.

 

I said that in one way I was glad he didn't have aspergers but actually I am not because at least with aspergers I new what was what and how to fight it. Now I feel back at square one and that all aspects will be affected... from his dla to working tax disability addition to his statement and education he has a bit about autism outreach will provide help if needed. Everything is changed. He copes so well and is a right actor mimicking what he thinks we want him to do or say that when fall out happens and yes it still does happen big time it can be a real shock to those who don't know him.. I took Nick round the food shop that evening and he ran riot burning off all his energy and creating more all whilst being a monkey literally ooh aah oo aa all the way round talking in it as well. pulling me and dragging me to where he wanted me to go or look at what he wanted me to see.. I didn't have the strength to keep him in check like I would normally...

 

There is so much more I want to say/scream and rant about but am too tired and deflated to continue. Thanks for just listening..

 

I love nick regardless and I feel more protective of him now. All I can say is I hope to God that the clinical psychologist never has to be on the receiving end of a similar diagnosis for his kids!

[Suze]

So sorry , hang on in there gather your thoughts , then got at it again you need some sort of explanation.Can you request another meeting to run through your concerns, don,t be defeated by this

[oracle]

How 'special' is your Specialist - how ASD specific are all of the other people who seen your son?

 

Have you ever had to do the three hour interview where they go right back before your child was born? I have no idea how anyone can dx, or in your case not dx, in such a very short space of time. An assessment takes much longer than this and I would certainly be asking why, after being told by so many people for so long that your son has AS they now decide he has not. This looks like 'Sheep' syndrome to me where all of the professionals take their lead from the most forceful person on the team and them follow then like sheep.

 

I too have sat in a room with lots of 'Special' people while they took a video of the meeting. ALL of the people in that room were wrong about my son as the real ASD professional realised very soon after meeting my son. Her assessment took 3 hours and three weeks of her viewing the video made during the assessment before she gave her dx of AS.

 

Ask for a second opinion - I would

 

<'> Carole

[witsend]

Oh ksanic how bl***y awful for you! Just want to send you this <'> and agree with suze and carole , of course you need a second opionion/investigate the whole thing further. Maybe get in touch with NAS and see about seeing their specialists - sorry if that's not aproppriate all I can think of to maybe help. yes your right the systen stinks I'm sure everyone on this website would agree with that at times. take care - luv witsend.

[Elanor]

This is wretched for you - how horrible to have this confusion and lack of support. I think you know what is affecting your child - and don't need to be mistreated bya bunch of people who don't seem to have done their homework. Such a shock now - but I agree, you are entitled to a second opinion, can you find a child psychiatrist with an ASD specialism?

[bid]

Hang in there <'> <'>

 

So sorry you've had such a horrible experience

 

Bid <'>

[Kathryn]

Hi ksasnic

 

So sorry this has happened.

 

Just sending you <'> <'>

 

K

[ksasnic]

Oh thankyou so much for your words of encouragement you don't realise what that means to me at present... thankyou loads..

 

I am going to start looking into this more.. earlier on I felt the shock, then the tears and then the anger .. followed by the anger... so i really do reckon there is more to this as by now I had thought I would be onto acceptance or something like the 7 stages of grief..lol

 

I must admit I was expecting a few interviews before dx was made but nope just the 1 which as explained earlier was it... not even a camera was used....

 

I am going straight to the nas site in a minute to see what gives there...

 

I told my mum earlier and she was amazed... she's seen Nick in semi fallout or as I say the dress rehearsal but never his main performance if she did she would be even more amazed and freaked... Luckily I can normally tell him how to behave and he does it no questions and some of the time with a wave of relief crossing his face where he doesn't have to work so hard in trying to cope as someone else is thinking for him and other times with a blank expression as if to say 1 red car, 2 red cars 3 red cars ooh blue car ... perhaps that was part of my mistake I should have just let him be his untamed self and count as many cars as he wants... oh I don't know...

 

Its got me thinking about all the time I try to keep on top of him so as to speak, helping him with how he should act when out in public - continuing the schooltime routine, trying to help him- taking the pressure off him, I should just let him run with his own jumbled actions. It makes me feel perhaps I have helped him too much.. God it makes me feel back to square one and helpless...

 

That man in one fail swoop has made me doubt myself again !! ah bless him... luckily I have an appointment with my head lady (counsellor) next week so I can hopefully claim back some of my strength then.... and

 

Anyway thanks again for listening to my jumbled up wafflings...

 

ding ding - seconds out round 2

[Suze]

Hi Kasnic, it,s good your still in contact etc with this team.Take someone with you next week and stress/demand / plead with the counsellor that they conduct a more thorough investigation,you maybe able to grab this situation back and turn it around, ask why the DX took only a hour, you expected to talk about all your concerns and did,nt get the chance, etc etc.Good luck with this it stinks of in-justice , and I really feel for you <'> <'> .

[oracle]

I agree with Suze take someone with you. My sons God Mother came back with me because my hubby could not trust himself not to hit these people. Just her being there made a huge differemce to their attitude.

 

Do find out about these people. Do you have a support group because they will probably be able to tell you just who is qualified to dx in your area.

 

I also filled in so many blanks for David and had strategies in place and did such a good job of it that when he was seen it was sort of like 'So what's the problem' must be you! But then I had been fobbed off with David from him being 3 years old so I really do know how you feel. The dx finally came when he was 13.

 

What area do you live in if you do not mind my asking you?

 

Carole

[ksasnic]

Probably the poorest county in England - west Yorks.. the county that everyone tends to forget about....

 

As we speak I am arming myself with information etc...

 

Problem lies that all the people who previous dealt with nick are either no longer in the dept or retired.. all except the main consultant.

 

What gets me is that what they say Nick has language, communication and social learning difficulties ????? hmm looking on the NAS site thats also Aspergers????

 

So when is Aspergers not Aspergers ?

[Helen]

... am really sorry to hear about all the trouble you and Nick are experiencing, I hope things soon get better for you both.

So when is Aspergers not Aspergers ?

... when there's money involved

[Helen]

... or rather I should say 'budgets'

[oracle]

My Geography is dreadful - where in west Yorks. I have contacts in Autism-in-Mind in Wakefield, Pudsey and Rotherham. They may perhaps know who you should be asking to see? It's just a thought.

 

Carole

[nellie]

Hi Kasnic,

 

I'm so sorry you are having these problems. <'> <'>

 

Nellie xx

[florrie]

Hi, I'm really sorry to hear of these difficulties and i really relate to them and how you feel, I've been there myself and after 15 years of realising something was very wrong am still trying to find appropriate understanding and acknowledgement for my son and myself both on the autistic spectrum.

 

All I can say is hang in there, most of the professionals didn't have a clue what it was, or how to treat it appropriately although there are some out there, my answer to it is to do some research to find an appropriate professional who does understand.

 

My thoughts are with you.

[Klou]

Hi Ksanic

 

I really feel for you. You have my sympathy and support. Get that second opinion.

 

We have only just started this process and yesterday a clinical psychologist told me my sons problems were strong personality type and some sensory issues. I was relieved at the time it wasn't ADHD or ASD in her opinion yet I have to read books on AS and sensory integrative dysfunction to help deal with him. I am now feeling duped and distinctly fobbed off. Even my hubbie said how can they tell in an hour whether he has a disorder/syndrome etc or not.

 

I can't believe they can turn round and say he isn't AS when you have all the other stuff in place to support him.

 

It doesn't make any sense, other than budget/money/funding related, someone on here has a signature about information being passed from the parents to the experts rather than the other way round. I think it is quite apt.

 

May be instead of the experts running training courses and speaking on AS etc to help parents there needs to be a conference for experts delivered by parents!!

 

Good Luck. I wish you success getting these people to see sense.

[Klou]

I wonder if any of these professionals who call themselves experts ever come on here and find out what it is really like for parents being pushed from pillar to post and being told things that don't match up and are clearly incorrect.

 

They clearly have no idea and my hubbies description of the National Fobbed Off Service seems appropriate.

[ksasnic]

I know the whole system stinks in this way... they should definately have parents views taken into account as we do spend 24/7 with the children.....

 

I have been feeling a little low as everywhere I go to read and research it still all points to the same thing !!!!! He is on the spectrum I don't care what they are trying to fob me off with.... misdiagnosis...

 

Just when I start doubting and think ok they now say its all learning communication etc problems Nick does or says something very odd that has nothing at all to do with learning... I told him to get his breakfast this morning which he does when reminded and reminded.. well he had his cereal then I took him to school no mention of anything.. I get back open the same milk carton up and it has sooo gone off, I mean not just on the turn... but he didn't notice it. I asked him about it later and he said it was fine.. and this was so obviously not fine.. which bit of learning difficulties is this I would like to know. He didn't tally that anything was wrong, let alone enough to tell me.. he got the cereal, he got the milk, he had the bowl and spoon and that was all he needed to make breakfast, now if he didn't notice the taste of the milk how can I get him to see the difference between gone off or going off to ok milk??? I suppose lumps help but that is visual.. I know he has a thing with textures but I hadn't even contemplated taste...

 

 

Well Nick has been very sensitive this week, upset at even the slightest thing and for no reason that is obvious I got out something from him earlier but it related to something that happened quite a while ago.. it was about a kid taking his toy car off him.. but there is still more to it he was so stressed that I had to give him some calpol to calm him down and also just incase he was feeling under the weather.. he never tells me...

 

We live in the wakefield area of west yorks.

 

well I'm off to bed if I can sleep so catch you all later...

[oracle]

Have pm'd you - maybe able to get you some hand on help now - fingers crossed ?

 

Carole

Edited July 27, 2005 by carole

[ksasnic]

Thanks Carole, Shona and Elanor

 

Much appreciated.. Yes please Carole - help is most definately needed..

 

Fed up again today - postgirl came and there was a letter from the occupational therapist saying that Nick seems not to have any specific physical difficulties and therefore will be discharging him from her books.. !!!!

 

Its started.. Nick still has problems and it seems all she has done is to determine that he should be right handed (he was ambidextrous before) despite his letter preference is all left handed.. All the male side in our family are left handed !!! But hey he is now a clumsy right handed kid who still changes if he feels like it to the left hand.... talk about fitting him into their conformity box !!! I am just - well just not surprised really but then I am also angry as hell. deflated..

 

I just get the impression that this is the knock on effect of his so called dx..

 

Still awaiting the official letter from the specialist with the relevant information..

 

But well all I need to do is win the euromillions 77 million jackpot and then all the other parents who just havn't got the money can get the help needed to get a proper dx.. one were the funding of the health authority doesn't take precedence.

God it makes me so mad.

Anyway on that note back to work...

thanks again