To diagnose (AS) or not?

[bizzi]

Ds 10 would most probably be given a diagnoses of Aspergers if we asked for a diagnoses. But am unsure what to do. He has asked why he's more sensitve, fussy, bossy etc. He struggles in the school setting, is regularly in trouble and intolerant of others, pupils and teachers. We struggle in other situations too, eg the dentist. We are moving area at Easter, he may well have to attend two new primarys before starting a secondary in Sept 2006. I think having a diagnoses will help me and him at the moment. But what about the future. I've been told he may be resentful, even angry about it.

Hi bizzi - sorry, I don't have any real experience of AS so don't know about the resentful/angry implication.

But, I do think that if a diagnosis helps you both and means he will get the support he needs at school, especially as it is going to all be quite changeable, then it may be a good thing. Alternatively I guess you could just talk to the school(s) about his potential difficulties and see if they are prepared to put in extra support without a diagnosis.

You probably really need to chat to MrsF or Jaysmum who both have sons around the same age with AS (I think). I'm sure one or other will be along later.

This thread strikes a chord with me. ds now 17 never diagnosed as AS - and i am glad now but for years would have loved to have had the problems acknowledged and 'official'. When ds was 9/10 he had educational psychologist assessment which revealed some pretty big problems. she suggested that an official diagnosis might benefit me but perhaps not ds. I am certain she was correct. Ds was moved to excellent small prep school that had experience with 'different' children. he thrived there with lots of one to one teaching from SN teacher, got excellent results in CE and his present school knows nothing about his earlier limitations. He is now still quite eccentric but unless you knew of his childhood behaviours I don't think anyone would now label him AS. Also if he had been diagnosed AS at age 10 my attitude towards him would have changed - and not in a good way.

Personally I think a diagnosis can be useful. My dd has the dx of language disorder and communication difficulties. We managed to secure a place in a speech and language unit because of this label as you have to have a speech or language disorder to get a place.
We also access lots of other things.
A label is just that, a label. My dd has language difficulties but there is so much more to her than that!
I have also read that lots of pre/teenage children with AS are actually relieved when told that they have AS as they know why they feel/act the way they do!

You could try to access some sort of psychology or even psychotherapy support for him. I'm not sure if you would need a firm dx but I know that AS chlidren around here get that sort of support, i.e. talking and thinking about how they feel about things and about themselves, hopefully avoiding resentful/angry feelings. You'd need to be careful though that the person doing it really knows their stuff or it could make him feel worse or more confused. SOmeone to talk to alone just for himself might help iron out some problems. Personally I'm nearly always in favour of dx but there must be some cases where its not helpful I suppose......
My sister who has AS is not diagnosed but there is no doubt and she knows it herself. No dx because SHE can't see any reason and I think that is part of the disorder, that she can't visualise something from another pov BUT she is truly hopeless at so many things and we all think would benefit from some sort of support. She knows she's different, mostly she doesn't care but when things go wrong or she gets things wrong she gets VERY upset, depressed etc. Even practical things like keeping the house clean, she could do with some guidelines to follow as she's hopeless at making decisions for herself and needs someone to tell her to do things (but would explode if me or my other sister or mum tried to do this!).

Dh received was given an unofficial diagnosis of AS when we were going through the assessment process with ds1. I know that it was a huge relief for dh as he felt that he finally understood why he had so many 'quirks'. Seeing the support that ds1 gets he says that he wishes that kind of help and understanding had been given to him when he was at school.

Thanks for your responses, perhaps I should do a tally as I clearly can't make the decision alone! At the moment it looks like 3 to 1!
Redsky, your comments concern me, you voiced my concerns, is this all just for me? Only he has asked why is he so different, I responded with 'would you want to know if you are something or have something that makes you a little different and means you have to work harder at fitting in than most others?' He leapt at this eagerly wanting to know what 'it' was . I said I didn't know but we could look into it if he wanted.
Davros, he does see someone once a fortnight, a family systemic (???) who's connected to the CMHT. He works with ds on social and emotional skills and also on self esteem building. Ds really enjoys these 'him time' sessions.

Coppertop you gave me helpful advice before and I didn't get back to you. Belated thanks!

Bizzi - have you read Martian in the playground It's written by Clare Sainsburys, who has AS herself, and has a lot to say about the values of a dx.

My ds1 is only 7.5; we have very recently seen an EP and at present we are working with the idea that we may need to pursue a dx of AS "at some point in the future", but that atm we are simply accepting that many of the strategies which are helpful to children with AS will be helpful to him too. But I guess in my mind the "at some point in the future" would be around 10, 11, or 12 around school change, according to how he is doing; and whether we think a dx would make things easier.

I expect for your son so much upheaval and change is going to be very difficult to cope with. A dx may be very helpful in making everyone realise quickly what support he needs? But what about the practicalities - if you're moving at Easter you won't be able to get a dx before then will you?

davros .im interested i what help you get with the talking issues as thats what were seeking for our son whose 5 and was diagnosed at 2 1/2, an excellent unit in another country have advised us to try and get some psychiatric counselling for him for his fears and anxieties so he is more able to deal with them before they happen .. we are under the camhs team too but havent been offered anything like that as yet ..could you let me know what you get for your child...my son has been diagnosed and im glad in that its opened so many doors for us and have been offered excellent help with school etc so i can definitely agree with dx..

You're welcome, Bizzi.

hi bizzi i'm really sorry to be the cause of any anxiety - and reading the other posts it does make me wonder why I didn't push for a diagnosis. Makes me feel like one BAAAD Mother. But as soon as the EP said is the dx for your benefit or ds's - I KNEW that it was all for me. However.... ds NEVER voiced any concerns to me - I was aware of how different he was but he has never expressed any concerns and when I have tried hinting he seemsto be totally unaware of what I am on about. I know that until he started at his prep school he was desperately unhappy and stuck in some very peculiar behaviours but he says he doesn't remember. I wonder!! One further thing - I would have pressed on for diagnosis if I had felt he was making little progress with the support he had at prep school - but right from day 1 he began to flourish so I didn't feel any need to pursue it. But I would still LOVE to know for my own satisfaction just where on the AS he would have been placed. Aspergers? Mild Autism? Moderate Autistic tendencies? Probably no more severe than that - but who knows???? his particular obsession for some years (from age 8) was poring over atlases and making endless lists of capital cities. But the strange behaviours were apparent to me from the age of 1.

I think the main thing is that an AS dx just describes the difficulties your child is having. It doesn't change anything about your child.
It has taken me so long to realise that

bambio, my DS doesn't get these services as they're not appropriate for him as a child with severe/typica autism who is non-verbal. However, I now the local Head EP and have heard her talk about providing these sort of sessions. We also have the (dreaded) Tavistock on our doorstep which also provides something like this. Dreaded as imo they should keep their noses away from very young no-verbal ASD children and very vulnerable parents but very likely good and appropriate for many AS individuals and their families. Tavi is NHS by the way.

Bizzi, my friend's DD was diagnosed with AS about a year ago. My friend worried about the whole diagnosis thing too but I think it has been the right decision. Her DD was relieved to know why she was 'different' and I think in many ways it has been very empowering for her. Plus she gets support at school and they can troubleshoot problems with professionals as she finds many parts of life difficult. I don't think she will feel resentful about her diagnosis when she is older- I think she has always known she is different from other kids and not known why.

Those of you that already know my struggle to get a DX of AS for J has been a long and difficult battle and one that I refuse to give up.
As J is getting older his "problems" are getting worse and the main reason for this is because he is begining to question "what is wrong with me".
Also his older brother who is so very understanding of J's needs is starting to ask....
Why can't J play with the other kids in the village without him needing an adult to be around just in case he has a meltdown. Why can't J sleep a whole night through. Why at nearly 9 is he still wetting the bed. Why can't J understand what people are saying to him.

As our Paed has said a DX isnt going to get J anymore help at school, neither is it going to change J BUT what it will do is give us a concrete reason why J is the way he is. When we have that reason we can make sure we do all we can in our power to get J the help he needs to understand why he is so different.

LHA are still refusing to assess and I am far too tired to fight them anymore, so we have booked a DISCO assessment with the EP who independently assessed J for our Parental Evidence for the statementing process.

So by the end of May I will be able to move one giant step forward, put the boxing gloves down and move on with our lives.

BUT not until I have shoved a copy of the DISCO assessment findings under the bloody noses of all the so called professionals who have not acknowledge our concerns for the past 5 years.

Jaysmum I feel for you, I've had my fill of 'he'll mature soon enough', 'wait till he starts playgroup' and 'wait till he starts school' and now even 'secondary school will be the making of him'. We're proposing to upsticks to be closer to my family for more support, my mums a TA at the local primary, she even said the other day that 'they'd soon straighten him out at her school!!' Are they all blind?

Since attending the cmht though I've had support from them and had my concerns acknowledged for the first time since he was 18 months old! Now for everyone else to understand I feel I need this dx but am scared this will inhibit him later.

Good luck with your DISCO assessment. What is this?

Redsky, in what way did you mean that your attitude towards your ds would have changed but not in a good way, in the light of a dx? Because obviously peoples attitudes towards a dx is a concern of mine, but who would really need to know? And how could a parents attitude change?

Hi Bizzi, look I'm a pretty unconfident mum at the best of times, and dh and I haven't always seen eye to eye about children issues. I just have a horrible feeling that if ds had ever been dx AS I might have wrapped him in cotton wool even more than I already have - and I don't think that would have helped him. Dh thinks I make a huge fuss about anything to do with children - but his attitude to virtually every problem is to ignore it and hope it goes away!

Also if he was dx AS it would be the first thing I would tell anyone about him because I'm such an immature blabbermouth - and it would just be like a big heavy label that I would dump on him. IFKWIM. I think he was extremely lucky to get the help he did at prep school. I don't even know exactly what they did - but it worked! I do remember he went through a phase of listening to Mozart music every night. And at one stage he played a flute for several hours a day.

Hi Bizzi - my ds was dx with AS/ADHD when he was 5yo, he is now 7. I was aware that he had ADHD from approx 18 months, as his behaviour had been like this since he was 9 months.

The AS dx came a bit later that year, but in hindsight seems very obvious. He is aware that he is not "the same" as his peers, and sometimes gets upset about it. I haven't told him yet (other than to say that he is very special) as I don't think that he would understand (and we don't have the support structure in place) and also that I feel as the closest person to him, I will know when the right time for me to tell him will be.

I can understand that people don't like labels - I remember not telling the school there was a problem (he was undx) when he started there because I felt he would just be labelled as a bad/naughty/disruptive child. He was suspended once before dx but, I felt, given more chances once they knew what the dx was.

Redsky, it took me a while to see my ds as a child with SN, and i still struggle sometimes to see him like this, but I guess all parents must do that?

Redsky, are you me? The unconfident indecisive mum/person, immature blabbermouth and dh attitude towards the family and children. My dh's burying his head in the sand has led to us in the last 2 weeks seriously discussing separation for the first time. Consequently he's making some massive changes to help out and support us as a family, including considering a dx for ds. For the 1st time I no longer feel totally alone.
What age did your son go to prep school? Ds had a very understanding teacher last year, she hit the nail on the head with him and he blossomed. Sadly all her hard work has gone to pot with his yr5 teacher

davros..thanks for info..please could you tell me more about tavistock? is it open for all ages.. do they help or make things worse...my son is VERY verbal..more like verbal diarrhoea which can be as bad as not talking!!!

I'ts just fantastic to talk to other mums about this! Tears of relief are flowing!! Biz, I'm so very sorry to hear that you too have an unsympathetic dh - but it is great that he is now supporting you if you want to pursue dx. It all depends on them getting the right kind of help - and if dx enables that, then that has got to be the way to go. As you say with the right teacher they can flourish - but another teacher can completely undermine any progress made. My ds went to prep school at age 9, I think. Until then he was at state school and I just 'knew' he wasn't really coping but the school insisted he was 'fine'. When he went into yr 5, at the end of the first week his teacher took me to one side and told me of her concerns - that he needed lots of one-to-one attention to understand what was expected of him. He wasn't disruptive, but he couldn't follow instructions. At that time we were awaiting the appt with the EP the following week so I was able to say we would see what came out of that. The EP tested him for 3 hours and at the end of it said there were some areas of great concern but that she couldn't possibly at that stage either confirm or deny AS - and would it benefit me or ds - but she then went on to say he may well thrive in ms schooling if I could find somewhere where he would get a lot of one-to-one teaching. By the following week I knew the prep school I thought would suit him - and we were interviewed and I was very frank about what the EP had said (written report from EP would follow). Before half term he was settled at prep school and the change in him was IMMEDIATE! After his first day there he said to me after dinner 'Thank you for my dinner mummy. It was lovely!' It was his first coherent sentence ever!! And it was such a sweet thing to say!! Damn -gotta go. will chat again later.

I've been thinking about this thread constantly, and feeling indecisive as to what to post on it!

Sometimes I think a dx would be helpful to everybody; sometimes I think it could be the worst thing ever.

Yesterday I met someone for the first time: she's never met ds1 (he's 7.5 btw), so the only things she knows about him are what she read in his EP report. One of the things it says is that he may benefit from a dx of (very high functioning) AS at some point in the future, but that it doesn't seem beneficial to pursue this atm. She was a lovely lady, and very helpful to me, but she really seemed to have fixated on this one point ... and that isn't even very close to having a dx. It has made me reconsider my opinions.

Having said that sometimes I think wouldn't life be easier in some ways if we had a label? Ds1 finds it hard to participate in out-of-school activities, because of social/behavioural issues.
If we could introduce him and say - this is ds1, he has AS, and he will be fine if you do x, y, and z ... then he would generally be OK (hopefully, probably, sometimes!).
But if I say - this is ds1 he needs to be handled in a certain way, and it is helpful if you do x, y, and z ... then the organisers of the group think I'm a paranoid parent, that he's spoiled or whatever, demanding special treatment for him. They ignore anything I suggest and the whole thing goes pear-shaped!

Hi Roisin

Do you feel scared of a dx as I do sometimes?
I know completely what you mean about the outside of school activities as we find these hard too. Anything has to be military style organised!

BHx