Everything You Know Is Wrong

[KarenT]

Some background before I start?

 

J was assessed by C&FP for suspected AS from January to November last year. From our initial conversation with the paed we were told that it seemed that J had either ADHD or AS but more likely AS. She visited at home and at the follow up meeting she said she was 99% certain he had AS but the testing would formalise that. She then told us to go home and get our heads around it then come back with questions for her to answer. At that next meeting the tone was very solemn, as though someone had died. We were advised to contact the NAS and other autism-related organizations and take advice from there on how to manage him.

 

The outcome of the assessment was inconclusive, with insufficient evidence across the triad for J to be diagnosed at this time, although he had scored highly on ADOS and other tests had pointed towards AS. At the ?inform the parents? meeting in November we were told that none of the professionals at the dx meeting had felt he was normal, that work would continue to address his needs, and that we would be referred on to a national autism specialist based locally for second opinion. Again, we were given no suggestion of an alternative explanation for his problems but confirmation that they were genuine and he needed help immediately. The letter we received a few days later documenting our discussion stated that J had a ?social and emotional development disorder? and was signed off by both consultants involved in the case.

 

Throughout January we?ve had the CAHMS nurse coming in to advise us on parenting strategies to manage J?s behaviour. There?s been conflict between her and us throughout, with her clearly surprised at our insistence to refer to J?s difficulties as autistm-related ? she had no idea where we?d got this from. It emerged yesterday that much of what we?ve been told up till today simply has no foundation. The paed had acted in haste in being so convinced of J?s Asperger?s, should not have advised us to seek out autism-related help (indeed it?s now being suggested that we?ve contributed to J?s worsening behaviour by treating him as something he might not be), and that the department consensus is Not that he?s ?not normal? as we?ve been told.

 

Within the space of an hour the bottom has dropped out of my whole world. On the basis of this paed?s advice I?ve read and read books on autism and AS and had been delighted to find answers to all the questions we?ve had over J?s strange behaviour and personality over the years. It all seemed to fit and we felt that at last we understood our son. He?s even responded positively to many of the autism-based strategies we?ve introduced. Now we?ve been told that it might not be true after all and it?s had a devastating effect on us. My dh, who for years has been adamant that his son was normal and just came on board with accepting that he wasn?t at the beginning of the assessment last year, is now wavering again and doesn?t know what to think. I?m due to have a meeting in school next week with the SENCo and Head and I haven?t a clue what to say to them any more. The upshot is that until it?s proven otherwise school will treat J as normal, acting on the advice of C&FP who barely know him.

 

Sorry that?s long. Really needed a whinge about this to people who understand and have been there.

 

Karen

x

[call me jaded]

Who did you see yesterday?

 

My first reaction is to ask what ASD training the nurse has had, and whether she is qualified to change the diagnosis.

 

Anyhow the bottom of it is that you need a second (appropriately qualified) opinion to sort out the sorry mess PDQ.

[Zemanski]

you need some of these

 

<'> <'> <'> <'>

 

you know your son better than anyone and if you are finding answers and ways to help him through understanding autism and AS and they are working for him then they are obviously right for him - carry on, even if he is not having the level of difficulty that might give him diagnosis of AS the strategies are all about social and emotional development and so would likely fit the social and emotional disorder that's been suggested.

 

how old is he?

 

We were told Com was normal and we were causing his problems at 7 but 2 years later he was clearly AS and our original consultant was very apologetic; even had Dot assessed just in case.

 

often the intial signs are there but a clinician might feel they are not strong enough to indicate an ASD and only later will they admit that it is AS all along (remember they do not like to diagnose a long term developmental disorder if they can help it as it has implications for resources)

 

stay strong

 

Zemanski

[oracle]

There are two people who can 'officially' diagnose an ASD. One is a Clinical Psycologist and the other is a Psychiatrist but not a bog standard Psychiatrist one with specialist ASD training. I was told this only last week by a Clinical Psycologist who was doing an assessment on our youngest, who is already diagnosed.

 

I was asking because dx's are being questioned by certain people in our Authority and as someone who runs the local parent support group I wanted to be sure of the facts.

 

If any of the people who have assessed your son so far do not carry the above titles then they are not qualified to diagnose. Now that statement in itself is enough to stir up a hornets nest as many Community Peads do diagnose and these dx's are accepted as being correct. My youngest was diagnosed by a Community Pead and I am more than happy with the dx, but if there is any doubt, and clearly there is in your case, then ask to see a professional who does know what they are doing.

 

This happened to us and our eldest who now has a dx of AS. However it took us ten years and a total breakdown on my sons part before we finally did get the dx. We had been seeing a Psychiatrist at our local Child and Family Unit and he convinced us that 'I' was the problem. He gave us a regime to take home and follow that I knew would cripple my son and when I said so to thie guy, my husband began to worry that we would soon have another label one that we certainly did not want. I made it my business to find out who was qualified to dx in our area and then asked for a referral. We had to travel out of area to see this person and it was one hell of a battle to see them, but within half an hour of being with this person I knew that we were finally seeing someone who really did know their stuff. After a very in-depth assessment David was diagnosed with AS aged 13.

 

You know your son best. If you feel that he could possibly have an ASD then fight to see someone who can say so one way or the other. Although NAS can not recommend anyone they can tell you who in your area you should be asking to see. I actually got that information from our local Carers Centre and parents can now obtain that information via our support group.

 

This is a great forum and just reading the threads will be very informative.

 

Carole

[KarenT]

Thanks for your replies.

 

J's 7 and has had noticeable differences from his peers since about two and a half.

 

It was the CAMHS nurse we saw yesterday. She'd come out to give more behaviour management advice but we locked horns over what he could and couldn't help and my reluctance to punish behaviours that I feel are in keeping with the 'emotional and social development disorder', eg kicking me when he's in obvious distress after a bad day at school. That changed the course of the meeting and she wanted to know why we felt so sure he couldn't help his behaviour. She did say that she also works with autist children on specific strategies but to date all she's offered us is the Naughty Chair, and I've been far from pleased with it.

 

We have been referred by Child and Family to a national expert but I've made enquiries and the waiting list is currently six months. Have left my details so they can contact me for a late notice cancellation but from what the secretary said there isn't much chance of that. She doesn't take private referrals so I can't go that route, but I'm considering arranging one myself elsewhere so investigating that now.

 

Zemanski, thanks for the hugs and advice. I do feel that I'm doing the right thing for J and I know he responds well to the support I give him, he feels comfortable knowing I will help him with his problems and makes great efforts to self-manage as a result of our discussing his problems. He came home from school on Friday full of pride that he'd not got cross with a little git who had plagued his whole day (an on/off 'friend') by pushing him in puddles, breaking up his Mobilo model (over J's head) and even biting his hair. Instead of going into a rage at him he'd kept control and told the teacher, even asked to stay in at afternoon break because he suspected that he'd be upset by this boy and didn't want it to happen. Now I think that's great, and all as a result of our strong relationship and by talking problems through when he's calm. Our way works, but it doesn't make him normal.

 

Carole, I can sympathise with your being blamed for your son's condition, I feel as though this is the direction things are going with us. J was first seen by the Consult Psych who heads the department in Reception when we suspected ADHD - he spent some of our appointment quizzing me on the depression I suffered from ten years earlier, and I definitely felt psychoanalysed. I don't suppose it helps that dh is very quiet and passive so I tend to do all the talking, so I guess that makes me a very controlling person who obviously expects extremely high standards from my son. The confirmation letter even suggested that because of J's high intellectual ability there were unrealistic expectations placed on him behaviourally. Well that certainly isn't true of us.

 

Right now I feel as though the C&FP dept are treating us as a 'typical' family and not as individuals. The advice they've given so far has been so basic as to be offensive ("Give him lots of positives", and "Perhaps it would help him to get ready for football if he found out that he'd miss football if he didn't" - like we hadn't tried those things ourselves years ago) and we really feel that they're starting off at a very low level without checking what we've done so far. It's like banging your head against a very hard wall.

 

Anyway, thanks for the advice. As ever.

 

Karen

x

[helenl53]

Hi KarenT

 

This post is setting alarm bell ringing for me.

 

I have posted previously about the funding being allocated to local authorities (don't forget that now health/educationa and social services come under one umbrella (and shared funding pot) called the childrens service) to target parents of EBD kids and this is 'positive parenting' type funding.

 

I have been concerned that in our area, our families are being sent on these courses and that Health Visitors etc are citing difficulties in parents life as the contributory factor in the the child's behaviour.

 

There seems to be a push to stop diagnosis of ASD's and ADHD type conditions by the services involved and instead to push towards the problems being caused by poor parenting. I think that there is the dawning of the realisation that there is one very big problem out there with our kids and this is a desperate attempt to put the lid on a bubbling saucepan.

 

I find this to be very sinister and KarenT - I would urge you to try and find an independent support group (I mean one that is not set up and run by anyone connected with the services).

 

Please also get everything in writing from people dealing with you and your child - such as this nurse? - As far as I am aware, they must report facts.

 

Carry on dealing with you child as you see fit - YOU ARE THE EXPERT and you have his interests at heart - you are not driven by finances

 

HelenL

[oracle]

Hi Karen,

 

I think that your thoughts are probably correct about the child and family people. We also had a long wait to see the right person but it was worth the wait and while we were waiting I cancelled every other appointment that we had with child and family. It was a huge gamble but it worked. My husband actually told the team that we were seeing that he thought that they were observing us for MSBP because he wanted this recorded. They said nothing response to his comments. I expected people coming looking for us but it did not happen. Maybe we were just lucky.

 

Stay Strong.

 

Carole

[Flora]

This thread has really struck a cord with me and I would like to say something useful but I really don't know what, the advice that Carole has given and what the others have said is fab.

 

I count myself as one of the 'lucky' ones in as much as getting dx for my two boys was relatively painless and straight forward.

 

I do hope you find some answers. Even though it's a 6 month waiting list I hope it will be well worth the wait.

 

Even with the dx I still get certain people (the head teacher mainly) inferring that the problem is either me or our home life. It irritates and upsets, and sometimes scares me, but somewhere we have to find the strength to keep fighting for our kids regardless of what they try to throw at you. Every now and then you will come accross a professional who really is on your side, but sadly not without kissing several frogs along the way.

 

Have some <'> <'> <'> Wish I could be more help.

 

Lauren

[kirstie]

You know, when i read this thread my first thought was, "Here we go again!" and i mean that regarding the 'professionals' Why the hell do so many of us have to endure this c**p and heartache when the finger is pointed at us and our parenting skills. It makes me furious and i keep saying it, but not one of us want anything to be wrong with our kids, we're not forcing them to diagnose our kids with something that doesn't exist i only wish these professionals (some, not all are guilty of it) would realise this.

When we started out on the diagnostic rollercoaster our initial appointment with a community paed (called the school doctor) was her basically fixating on the fact i had left Lewis's dad when he was 15 months old (he was 3 by this time) and ignoring the fact that i was telling her he had displayed behaviours long before i ever left. She thought he was "playing beautifully!" when he wasd in fact lining cars up and had his face to the floor intently watching the motion of the wheels, and was obsessed with Thomas the Tank (amongst many other things) Anyway she referred us to the CAHMS as she was of the opinion Lewis's challenging behaviours stemmed from the fact he was emotionally damaged.

But you know when you just know....... We saw the CAHMS who referred us on to our Communication clinic, where we finally got our dx of AS. I didn't give up though and i made myself heard at every oppertunity. Maybe they thought i was neurotic, i don't really care because it paid off in the end!!!

I did what you have done, left my phone number incase of cancellations and really didn't expect to hear anything, but i got a phone call within a short time asking if i could go in the next day (3 or so months before our scheduled appointment) Wild horses couldn't have stopped me, so don't be too dispondent it could happen!

You are right to question these professionals and go with your gut instincts. I am just sorry you are having such a hard time just now. <'> <'> The paed we have now is amazing and i couldn't have hoped for anyone better for him to be under. She is totally dedicated.

I do understand it can be difficult to diagnose, particularly where the children don't always tick all of the boxes but no-one is the same, we are all different and unique and i think that also applies to our kids on the spectrum in terms of the behaviours they do and don't display. Stick in and i hope you will get the answers to your questions. In the meantime, we are all here for you. <'>

[ksasnic]

Its such a nightmare to get the dx. i feel Nick is so AS at times, I have spent ages trying to recap my memory as to what he was like when he was younger and I find it very difficult as we just live with him like this - this is nick always has been - to the pros they want to see totally obvious things but to us parents that live with this the things that the pro's are asking about are the norm so -well I for one don't really notice it as being any different as its just Nick... can't they see that we as parents know our kids so when something is wrong then we know it...and lets face it would we really be wishing our kids all these difficulties that they are facing ??? who in their right mind actually honestly would be going down the road of dx unless we thought there was something not quite right !!!!

 

We have been told that the other group in county (West Yorks) that can re-assess for his second opinion is still led by the same misenthrope that didn't have a clue last time .... and well I can't see him changing his view !!!

 

Is there anywhere else we can go to for this... I mean even privately and how much would it all cost..

 

oh well onwards and upwards - oh yes does anyone know of any support groups around Selby ? As I am in need of a bit of support..

[smallworld]

what county is Selby in these days ? !!

there is a support group here ( haven't been though but know someone who has)

PM me if you want more details re. people to dx re second opinion,

 

wac

Edited January 29, 2006 by waccoe

[reuby2]

I have just posted aking advice about the proffesionals and their differing opinions.I feel totally confused to put it nicely.

 

 

Thing of you. <'> <'> <'> <'>

 

One of the things that my son's senco wants to happen it a multi agency meeting as i'm the one carrying the info back to each proffessional.

[asereht]

Karen ,

 

I would go with what Carole has said.

 

We have been through much the same thing in the past,( too long to go into) but I really understand the part about being told to read up in AS/Autism. I too was told to read and surf the net and find out what I can only to be told on the next visit " oh no I don't think that now" and we were given things to do to help my son ! You don't want to know what these were,suffice to say one was to get him on the local football team!!!!!!!!... I never went back to this guy and like Carole got a referral and my son too was dx at 13. I got great advice here at the time.Let us know how it is going.

 

Theresa

[lil_me]

Really sorry to hear you are having such a nightmare of a time at the minute. I feel quite lucky now that my son was referred to a Clinical Psychologist by his pead and then when we were refered to CAMHs it was to a Clinical Psychiatrist with SD training who basically has confirmed the diagnosis and is doing all she can to help. Is it possible for you to request a proper diagnosis for J a bit sooner as until then you are left in limbo really ? I know it took almot 18 months (8 months for first appointment then several observations until diagnosis was made) for my sons to be done but I am pleased it has been done now.

Edited January 29, 2006 by lil_me

[KarenT]

Thanks for all the support on this, people.

 

I did ask if there was any way we could get the second opinion assessment brought forward but there isn't a way - they don't take private referrals so all I can do for the time being is wait and it might take six months. Right now I feel uncomfortable about working with C&FP because the bottom line is I don't trust them - they're making all the noises about putting us on the right track and making up for the mistake of the paed who told us to research AS, but in my heart I feel that she was giving us an honest opinion and I don't understand the reasons behind the backtracking. What if she's our only ally in this? And the senior psych consultant and CAMHS nurse are the bad guys withholding information from us, and advising school on how to manage J? There's no way I can be fully on board and cooperating with C&FP now and that's only going to add to J's confusion if he's being treat one way at home and another at school, but realistically I can't pretend he's normal if I know from experience that he's not. Personally I'd like to go for a private assessment elsewhere, asap, but dh wants to wait and go the route we've been suggested to the local expert. I don't feel happy about waiting that long but he's dh's child as well so his views have to be taken into account. I still think I'll look into it though and maybe get some advice.

 

So for now we'll be playing it cautiously and praying for an earlier appointment with the local expert, continuing to manage J as we have been at home and keeping a close eye on things at school. Will keep you posted on our meetings at school/C&FP next week.

 

Karen

x

[KarenT]

Just a little update on this...

 

After Friday's bombshell the CAMHS nurse said she'd arrange an urgent meeting for us to discuss Child and Family's collective view on J's situation to date, given that we've either been misinformed or misled in some way. Well, she's just rang with the date for the 'urgent meeting' - 27th Feb! And the professionals' meeting will be held the day after, almost three months to the day since we were given the outcome of the assessment. Take your time, guys, no rush.

 

You know when you feel like you're banging your head against a wall?

 

Karen

x

[Bullet]

I can only begin to imagine how frustrating this must be for you Karen . The only thing I can suggest is that you turn it on its head and ask them how they came to the conclusion he is an NT. If they are forced to prove he is "normal" they might look more closely at him.