Drowning in a sea of ignorance

[Flora]

Not sure if this is a rant or not, but feel the need to get these thoughts and feelings out to maybe help me see some sense in it all.

 

Some of you will know from my previous posts that my AS son has been having a terrible time with school;he's been turned down for statutory assessment; he's been put on antidepressants; has regular respite from school; regular appointments with CAMHS and basically between September and now has been an absolute night mare for him and the whole family.

 

Yesterday he had another appointment with CAMHS and I came away with him feeling angry, depressed and fairly hopeless. I won't got in to great detail but basically this is what I got from the meeting:

 

1) She told me off for keeping him off school on the really bad days

2) She told me off for joining in karate lessons with him instead of making him go by himself

3) Displayed a total ignorance of ASD by saying that all children are stressed at school and all he has to do is learn these relaxation exercises to be less stressed

4) Displayed total lack of ignorance in the system and who's who by thinking she had been in touch with the school because she'd talked to a LEA officer

5) Told me I had to be firmer with him when he didn't want to go to school, even though I have described how difficult this is with a boy who's nearly 12 having a total melt down and threatening suicide

6) Showed a total ignorance of how all forms of communication with him are impossible during melt down

7) Repeated a conversation she'd had with the LEA in October where they assured her he was going to get help at school on SAplus... and then totally ingnored me when I tried to explain that the autism outreach teacher said 'his needs are being met', which means the reality is he's getting no extra help.

 

The list goes on. At risk of coming accross racist, please don't think I am because I most certainly am not, however this clinician does struggle with expressive and receptive English and I am certain there is a difficulty in her understanding both me and my son. She constantly becomes cross with him because he talks to her in a very quiet monotone voice (he's got AS.... go figure ).

 

I came away feeling very frustrated, that the person who is supposed to be helping my son displayed such ingnorance in ASD and such a lack of understanding of how bad it is when he is having a melt down.

 

I also felt really jittery that I got the impression she thought I was being irresponsible in keeping him off school when things are really bad for him. I got the feeling that we are only a hop away from her contacting SS

 

Today my son went to school crying and wailing. I know I need to take another step but I'm so anxious and fed up I don't know where to turn next.

 

Sorry if this is a long post; but I really do feel like I'm drowning in a sea of ignorance at every turn; even the 'experts' come out with twoddle and display a terrifying lack of understanding.

 

Where the heck do we go from here?

 

Lauren

[Malika]

Hi Lauren

 

Just reading your post makes me angry, oh yes I know the feeling. I don't have much time right now but will post a longer one later on.

No you are not alone have plenty of these . <'> <'> <'>

Take care. <'>

 

Malika.

[supersec]

Lauren

 

All I can send to you both at the moment is <'> <'> <'> <'>

 

Having not got that far with DS i can offer no practical advice other than I think that those so called "experts" talk a load of old tosh too.

 

Sorry I know that that is not much help.

 

Keep smiling and love to you both

 

Carolinexxx

[mandyque]

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

 

I despair every day hearing these sorts of stories, it's like everywhere we go we run into a wall because somebody doesn't understand that autism is a totally different issue to just bad behaviour and anxiety you may find in NT children. Our faith in professionals is battered time and time again with their assumptions and patronising attitudes

 

Do you have any dealings with social services children with disabilities dept? Even if that doctor were to refer you then this dept should back you and try to help in some ways, it may be useful to contact them if you haven't already.

[mossgrove]

Lauren

 

When you say you had an appointment with CAMHS who were you seeing? Was it a consultant, a support worker, a Pschologist?

 

The reason I ask this is it appears that the person you are dealing with has no in-depth understanding od ASD's just of school children in general.

 

The keeping off school on bad days is a toughie, no doubt about that. I had a long conversation with the Headmistress of H's special school whenhe was proving very difficult to get into school. We felt that we may be better withdrawing him and trying something else as he was so resistant, but she reassured us that he was actuslly fine at school and things would improve. I have to be honest and say that we didn't belive her, but reluctantly gave it a bot more time. We also improed the transport arrangements.

 

When it cam doen to it, she was right and he has settled in wonderfully.

 

The reasoning she had for not letting hihave the really bad days off was this:

 

Autistic children in the school environment are accutely aware of the lack of control they have in the situation. By letting them have a day off school when they are particularly put of control, they realise that, through exceptionally poor behaviour, they can establish a measure of control over whether they go to school or not. They often lack an empathetic understanding of consequences of their bad behaviour onthe people around them so they will regard it as entorely rational to behave incredibly badly whenever they don't want to go.

 

One they realise that they do not have any control over whether or not they go to school the behaviour will often improve.

 

I am not saying this applies to you, and the woman you saw was out of order in implying that it is a straightforward decision as nobody wants to send their child into a situation that is making them stressed and unhappy, we have been there and know what an awful dilemma it is.

 

The purpose of my original questions was to work out if whoever you were seen by had specific experience of Autism. If not you would be within your right to ask her to be replaced by someone else without causing offence.

 

Simon

[Flora]

Thanks all for your replies so far.

 

Simon, the woman I refer to in my post is a child and adolescent clinical psychologist!

 

The problem is that most of the time he is very quiet and well behaved at school. The fact that he comes home and all hell breaks loose is what the powers that be are overlooking. He's very depressed and feels really let down that all my attempts to access help are failing. I've spent years being firm and making him got to school; it seems that now when I take this stance he feels like the whole world is against him and is driven to despair; I don't want to make him feel like this as he has expressed suicidal thoughts and he needs to know that I, at least, am on his side and understand the depth of his anxiety.

 

I really don't know where to turn to next; but the idea of asking for referral to a different clinician is one I intend to persue.

 

Lauren

[oracle]

Hi Lauren <'>

 

Been there done that and TOTALLY IGNORED them after David tried to throw himself out of a window during one of these appointments and then under a bus when we left the appointment. But do we really have to push our children that far

 

During the last few days (because of the continuing horror stories coming from my authority alone) I have come to the conclusion that many professionals may well have a great knowledge of ASD which is often the case BUT unless they have the understanding to go with their knowledge, I feel that there knowledge is a waste of time. It's a bit like our children really they often have the academic ability but do not have the skills to apply their knowledge. With the professionals they do not have the understanding to apply their knowledge. I find this very frightening because these are the people whom are listened to.

 

After our last visit to CAMHS with David I came home and did what I felt was best for David. And forcing him to sleep in a dark room alone was not what I considered best for him. Along with a list of other 'must do's' as long as my arm. At this point we were on our own and I really was in the dark myself but I knew that I could not do any worse than they were. It was a long hard journey but we did make it through.

 

It is a difficult decision to make but if all else fails then do what you feel is right for your son.

 

Sorry rant over now.

 

Carole

Edited November 16, 2005 by carole

[mossgrove]

Lauren

 

Sorry if I made it sound easier than it is, I know it is bl**dy hard going!

 

One idea that has worked for some parents is to buy/borrow a camcorder and video the meltdowns after school or invite a professional (Such as an EP) to come to the huse and see your son on his return from school. Sadly people do not understand until they have seen it.

 

In our eldest sons last term in mainstream (8, AS) we got out GP to write a note about often needing time away from school with stress and reduced his attendance to three days a week. He was so stressed by the end of a five day week he wasn't learning anything anyway. This is not an option for everyone due to domestic circumstances, but it worked for us. We stuck to the same three days rather than keeping him off in response to meltdowns.

 

Child and Adolescent Pychologists will have expertise in a range of disorders but may have little specific knowledge of Autism and more specifically, knowledge of interventions for children with Autism after diagnosis. Referring to language difficulties will be counter-productive, but asking for a Psychologist with specific experience of long-term care for paople with Autism should not cause offence. If there is a support group in your area it would be worth joining to exchange information about Psychologists in CAMHS so you ask for the one that othr parents speak most highly of. We get wonderful support from the community pediatrician (who isn't in CAMHS at all) so that may be an avenue to pursue.

 

Simon

[Suze]

Lauren so sorry it went badly yesterday,can you get a referral to see someone else at camhs?.....someone who has more of a ASD knowledge.The video is a good idea.Best of luck Suzex.

[Guest flutter]

<'>

i would try and see someone else, she me not have any hands on experience, if that makes sense,

tc

C x

[smiley]

Lauren <'>

 

Please put your worries in writing - this woman is obviously not the right person to deal with children with ASDs. She sound utterly clueless! At least you will have one positive thing come out of this - if enough parents complain the very least they should do is give her some decent training - (failing that - send her into the Batcave for a bit )

 

Put in your letter that you'd like to have someone else take over your case.

 

Hugs <'> xxxx

[asereht]

the woman I refer to in my post is a child and adolescent clinical psychologist!

Hi Lauren , from my experience psychologists ( any we have seen) do not seem to have much experience of ASD's. I had much the same problem last year with my son and I wrote to them after a particularly bad visit with ours and requested a referral . I also got the back up of my GP.

 

I asked to be referred to a psychiatrist ,one who had experience of ASD's.

 

One year on things are not wonderful but with the help of the psychiatrist he attends now we are getting the help my son needs.

 

I hope things get better for you . In a situation like this you really need to fight for what you need even though it may mean treading on some peoples toes. You can tread gently!!

 

Best of luck <'> <'>

[curra]

Hi Lauren,

 

what you describe in your post sounds too familiar to me. My son has also refused to go to school and has cracked under the strain of work and bullying, all because the little support he was receiving last year has been now withdrawn as he was according to the teachers doing "so much better".

 

He used to go to a child psychologist who knows about AS but who was not able to see him many times. I have no idea why he couldn't make time for my son since he was at that time suffering from a serious depression and talked about killing himself almost every day. Most psychologists know very little about AS. They tend to see their difficulties as the result of family conflicts and poor parenting.

 

I agree with Asereht. I went back to the GP, who is very supportive, and urged him to refer my son to a child psychiatrist and although we are still waiting for the appointment, I hope that he can get better help from a doctor.

 

Hope everything goes better for you and your son! <'>

Gloria

[Kazzen161]

Is the school aware that he is having these days off due to stress? You coudl try contacting the Education Welfare Office, and asking for help and advice. When I contacted mine she said she didn't know what to suggest - so at least I knew I wasn't not doing anything I should be and that she was aware of the situation.

 

I managed to get the Autism Outreach person in to advise us, and all she suggested was relaxation exercises for R - so much for the school making adjustments!

 

Just to give you some hope, R was hardly in school for Yr 7, but he has been a lot better this year (Yr 8), for no apparent reason. Up to half term he was in school full-time, but I can see the strain is starting to show and he has several days off "ill" recently - he just needs a break.

 

Karen

[Zemanski]

our second consultant was great, he works in the room next door to the first one (who rang me to tell me I was making a mistake moving to him and Com's problems were because we put pressure on him) - Com got diagnosis within 10 mins after 2 years of being told it was all our fault and he writes really supportive letters and even attended tribunal for us free of charge when thee LEA refused to accept the diagnosis as late evidence.

 

. My son has also refused to go to school and has cracked under the strain of work and bullying, all because the little support he was receiving last year has been now withdrawn as he was according to the teachers doing "so much better".

 

this is exactly what happened to Com

 

it took us a term to get the support back (this is in his statement so it was illegal to take it away without a review any way) by which time he was in the anxiety spiral well and truly and it took another term of bitter battle to get them recognise they weren't meeting his needs and a final term to negotiate the provision he now has which is 10 times what he had the year he did well but because of what they did to him his needs are that much greater now!

 

Zemanski

[Malika]

Hi Lauren

 

As a generality psychologist... or all sort of pshy do not have a real understanding

of ASD but even when they have they often fall short in their application of it I know now 3 professionnals who (talking to them in deph ) have a good understanding of ASD but then I notice that they may not necessarly understand a particular child with the condition or as their understanding is intellectual only, when certain complexe issues are raised they cannot work things out properly.

 

It is like ASD kids may work out how to make friend and not to keep the frienship as when the relationship develope they fail to work out all the more complex signals and interactions around the friendship.

 

The obvious point is they do not see your child at home. I had plenty of those silly recomendation with H mainly from the EP , it really made me mad as they treat ASD children like NT seeing their anxiety as a consequence of a "normal" life input failing to remember that ASD children are over stressed by all what we as NT consider "normal" input, to push it on this sens is not going to make your child better but more stressed an even less able to function, but some professionals cannot or do not want to understand.

 

I understand what you mean about the pshycologist cultural background I had this pb with my daughter when she was sick (thyrotoxicosis) and had lost nearly 3 stones the GP did not seem to get it ,eventualy, thinking that my GP at the time was Asian (don't take me wrong I have very good Asian friend) and that most Asian girls tend by nature to be very thin at that age I realised that it was not obvious to her that my daughter was definitely not herself in being so thin.

Being often involved with other communities I know that there is a gap in dealing with behaviour problems even between France and the UK there is a gap French tend to be much more controling in their upbringing specially for schooling, I must say that I learned a lot here regarding understanding children and allowing them to relaxe. It is deffinitly working better especially for AS ASD children. To a certain extend of course.

 

As for the present situation I agree with all, the best way should be to write what you disagree with and make sure they take it seriously. There is definetly a nasty mood going around at the moment respective to the already too little help our children are receiving.

Another advice is do not trust them completly when I give a day off to my son I never tell at school that it is because he was too stressed, just say he was not well which is true anyway.

Respective to the assesment have you made an appeal to the SENDIST if not it is worth considering it even if I have lost mine last year H is receiving a bit more support now than before.

 

Hope this will help, thinking of you take care. <'> <'> <'>

 

Malika.

 

Malika,

[Malika]

HHmmmm I think I am developping a double personality here wonder if it is because of the batcave.......

[oracle]

Malika I think may of the professionals have the knowledge but not the understanding. Well certainly not the understanding that impact differently on each child. I think knowledge and understanding are quite different and maybe you really have to live with ASD to understand it - although even then is can pass some people by.

 

Carole

[Malika]

Yes Carole I agree with you this what I mean by intellectual understanding it is a knowledge from the books but they are missing the practical one, parents have in caring every day after their AS ASD children.

 

Malika.