Jump to content
JJ's mum

Diagnosis or not?

Recommended Posts

My son had a 4 1/2 hour assessment today with the multi discplinary team or something like that.

They have said he has aspergers syndrome and that is the teams expert diagosis. However they asked me whether I would like them to make the diagnosis formally to the school etc or whether I would just like his difficulties listed. They also asked if I would like a blood test for some genetic condition that has been linked with Autism. I was wondering if anyone had any advice as to what to do.

 

My immediate reaction to the blood test is to refuse as son is petrified as he had one when the docs suspected meningitis a few months ago. I dont want to needlessly make his fears worse.

Im not sure at all whether a diagnosis will help him. A year ago his difficulties were more apparent but he is doing well at school and the specialist teacher has said no intervention necessary.

He is 5 and just started school in September but has no problems and can now accept that the timetable changes sometimes.

 

Do you think a diagnosis helps?

Share this post


Link to post
Share on other sites

Having a formal diagnosis may be helpful should you encounter problems in the future - as he goes through different stages he may find things more difficult, and help will probably be easier to get if you have a diagnosis

Share this post


Link to post
Share on other sites

It's a tricky situation, and not an easy decision to make, especially as DS seems to be coping well at school at the moment.

My gut instinct would be to make it formal with the school - going from experience. It can sometimes be difficult to tell on the surface just how well a child is coping, and simply because he's being quiet and complying with the work may mean that his needs get over-looked.

Share this post


Link to post
Share on other sites

I'm guessing the blood test is for Fragile X, a genetic condition which can be associated with autism (correct me if I'm wrong, anyone) JP had the test but it was negative. I'm not sure what the benefits of knowing it was Fragile X would be, other than knowing iyswim, but there may be someone here who knows more about it than me.

Share this post


Link to post
Share on other sites

Hi JJ's mum,

 

It's great that your son has had a good start at school and is doing well - I really hope it continues. You may get many different views on this, and this is just my personal opinion.

 

I think an official diagnosis is a useful thing to have on record, even if, for now, the school is doing everything right as far as your son is concerned. He will almost certainly face greater challenges as he moves up the school, especially at the main transition points at age 7 and 11. He may cope perfectly well - so much depends on the understanding of individual teachers, the environment, and his own particular strengths and weaknesses, but if he did need more support at any stage, having that dx would be a useful starting point for discussing the situation and getting help.

 

Re the blood test - not sure about that one as I've not heard of this being offered before - was there a particular reason why it was suggested in your case?

 

K x

Share this post


Link to post
Share on other sites
I'm guessing the blood test is for Fragile X, a genetic condition which can be associated with autism

Yes that is the one. The paediatrician didnt know if there were any benefits for him either, only to detemine a genetic link as there is evidence to suggest that Autism is inherited and in my sons case there is a history on his fathers side.

My reservation with being diagnosed with a genetic condition it is possible, even if unlikely that he could be counselled about the risks of having children. I wouldnt want him to feel that it could lead to his children being affected and it is certainly irrelevant at age 5!

Share this post


Link to post
Share on other sites

It might be wise for him to have the test if/when he is considering having children. Given his anxiety over blood tests, I personally do not think it is worth it at this point. It won't change his needs that have been identified at the assessment.

 

I think it would be helpful for the school to be informed of his diagnosis and his difficulties listed. The diagnosis is a label which indicates certain traits, but can be counter-productive if your son does not exhibit every trait in a stereotypical way, or if the school have a poor understanding of Asperger's. A list of difficulties would help school exactly what difficulties your son has.

 

Although he is coping well in school now, he may need some support later, especially as he gets older and starts to notice that he is different from the other children. It could be useful for the school to know in advance, so that any problems can be dealt with early.

Share this post


Link to post
Share on other sites

Hi JJ's mum it is also worth bearing in mind that even if school is being supportive things can change if the Head Teacher changes or if you need to move house to a different LEA.

Could the genetic testing be to help you decide whether to have any more children? I don't know about your case without being clear re what the test is.If it is it would be worth thinking about whether you are planning to have any more children.Karen.

Share this post


Link to post
Share on other sites

The test for Fragile X is a big blood test, so personally with what I know now I would refuse that at this stage if he doesn't show the other symptoms associated with it like facial ones.

 

As for the full diagnoses on his AS condition, YES. You need this for all those authorities out there that are 'supposed' to help. I would also want a list of his problem areas in writing. Doing this will means that any future schools etc he goes to can not back out of anything with regards to his help and care. He done the hard bit, examination.

 

It's not really you or your son requiring a diagnoses but mainly the schools and the DWP, and they can both be stroppy if you don't have one!

Share this post


Link to post
Share on other sites

Hi JJ'sMum,

 

I our case we had a broad diagnosis in our case with my at the age of 5 or 6 of being on the 'autistic spectrum' we refused this at the time as we felt that he may have asperger or high functioning autism at the time however the consultant reject this :unsure: we insisted on no formal diagnosis at the time and listed his difficulties in his statement. When he was 9 1/2 he had another assessment and the consultant (another one) was positive he has Asperger Syndrome and although it is still on the spectrum it was more specific and reflected his needs more. We accepted this diagnosis then and made his school aware of it and that really helped very well especially on transition to secondary.

 

In relation to the blood test I really don't see any point for it at all. Yes there might be inheritance among his children but it is not a life threatening condition and I believe it is completely wrong to stop having children if you are asperger; you just need to be aware of the possibility and I am sure he will be aware of them by then and will be also able to deal with any situation then given his life experience.

 

Pragmatic

Share this post


Link to post
Share on other sites

Hi JJ's Mum,

 

I do agree with what has been said by the others here. I feel it would be in everyone's best interests to make sure the formal diagnosis is known by the school. We are still waiting for a formal diagnosis to be done forLuke, even though all the professionals that deal with are pretty convinced that he has Aspergers.

 

We have found at school, without the formal diagnosis, the way Luke has been dealt with has depended on the individual teachers concerned, their understanding of AS and whether they are willing to admitt there are issues and deal with them in an appropriate way. We have been very luck for the last 2 years. We have had teachers that accept Luk'e problems, understand them and deal with him in an appropriate way. This means that he is reasonably happy at school and is doing well. In year 1 we had a teacher who would not recognise his problems for what they were, and so he struggled. With a formal diagnosis, you have something that you can use with the school to make sure all your son's educational needs are met.

 

We have found that Luke has been struggling more the further up school he has gone - the differences between him and the other children have ben more noticable as he has got older. But with the right level of support he is coping very well.

 

Hope this helps. I have woffled on a bit :rolleyes:

 

Linda

Edited by Lindyloo

Share this post


Link to post
Share on other sites
Could the genetic testing be to help you decide whether to have any more children?

Im not sure to be honest. I doubt this is the reason as all the family history is on my ex husbands side of the family. Having any more children with him is the last thing on my mind!

I am however pregnant so maybe it has something to do with it. But if that is the reason then Id burst their bubble because my son is gorgeous. Id rather 10 of him than 2 like my daughter who is currently making it her lifes mission to answer back as much as possible.

It has been noted that my son doesnt smile so maybe that has something to do with the test but I think whatever the reason is, Im refusing it especially since it is a big blood test and on same ward he was in when he had suspected meningitis and hence the blood test.

I dont see a reason to avoid having children because of the possibility of aspergers. Im a believer that normal is overrated.

Share this post


Link to post
Share on other sites

with us DS needed to be statemented and have a diagnosis of autism as he is at special needs school and they only take in autistic children

DS had to have blood test before they would say he was autistic as they were testing for fragile x as it is similar to traits to autism

Share this post


Link to post
Share on other sites
Im not sure to be honest. I doubt this is the reason as all the family history is on my ex husbands side of the family. Having any more children with him is the last thing on my mind!

I am however pregnant so maybe it has something to do with it. But if that is the reason then Id burst their bubble because my son is gorgeous. Id rather 10 of him than 2 like my daughter who is currently making it her lifes mission to answer back as much as possible.

It has been noted that my son doesnt smile so maybe that has something to do with the test but I think whatever the reason is, Im refusing it especially since it is a big blood test and on same ward he was in when he had suspected meningitis and hence the blood test.

I dont see a reason to avoid having children because of the possibility of aspergers. Im a believer that normal is overrated.

 

 

Oh dear I am very sorry indeed if I have said the wrong thing.I did think when I posted that I was not sure how to word the post. :tearful::tearful:

I did not intend to give the impression that I in any way think that the possibility of AS is reason to avoid having children.

 

I was thinking that that might be why you were being offered Genetic testing.If it is why then it is very obvious that you would not want it. >:D<<'> Karen.

Share this post


Link to post
Share on other sites

There does seem to be a bit about Fragile X in the media lately - and the article I read was rather misleading - almost implying that this specific gene was the cause of Autism - which we know is not the case. It is more that the Fragile x-syndrome presents similarly to autism.

 

However, I was unaware that blood testing was being offered. DS2 was assessed and the paediatrician dismissed Fragile x just by looking at him (rather closely and had a very good feel of all his bones!). :unsure:

 

I think it is more likely that blood testing is being offered as it is now possible to test for fragile x by blood test - and if positive then you have a specific diagnosis.

 

I personally would not have the test done - just on the basis that blood testing would be traumatic.

 

It was hard enough having DS1 tested for coeliacs and dietary allergies - and I wouldn't put him through that again unless it was life threatening!

Share this post


Link to post
Share on other sites

I forgot to say - regarding a general diagnosis of ASD as opposed to just listing difficulties, I agree with what has said before. A diagnosis - even if it is Autism Spectrum Disorder can make a difference. SS in our area will not provide help if diagnosis is Aspergers, but will if the diagnosis is Autism or ASD. Also, in a lot of parent's cases, having a diagnosis can help put your mind at rest. Many parents can be made to feel as though they are just imagining the signs - and a diagnosis can help reassure parents that they are not.

 

Also some support groups will not take families unless there is a diagnosis of Aspergers or ASD.

Share this post


Link to post
Share on other sites

JP was dx'd over 13 years ago & the blood test was presented as routine - it was very traumatic for him though, they only managed to get a bit of blood but luckily it was usable. He still remembers it.

 

I reckon the only good reason for knowing would be to rule out the possibility of learning difficulties, which are associated with fragile x but not with ASD. Again, correct me if I'm wrong anyone, I've been googling a bit to refresh my memory.

Share this post


Link to post
Share on other sites

I think a diagnosis is generally a good thing. If a child has ASD they have it whether a diagnosis is given or not and I think in general a child with a diagnosis is more likely to be able to get the correct support rather than a child with a problem list. Problem lists at the end of the day are just a long winded way of saying the child is autistic! With my son we found a diagnosis only became important once he went to school, before then intervention was based upon his needs but that changed once in the school system. A diagnosis not only helped us but helped others understand him too

 

I would be inclined to have the blood test for fragile x is there is any features that might suggest it. Fragile X is a little different to ASD so a different intervention package might be appropriate. Also there are issues if you have any more children. Genetics is a bit rusty but pretty sure that in in fragile x the mother is the carrier so might influence your decision should the need ever arise again. DS was tested for this along with other chromosomal disorders when he was first investigated as his speech was delayed

 

HTH

 

Lx

Share this post


Link to post
Share on other sites
I think a diagnosis is generally a good thing. If a child has ASD they have it whether a diagnosis is given or not . . . A diagnosis not only helped us but helped others understand him too

I couldn't agree more. :) Listing difficulties to me seems like a step backwards - it is because of the particular difficulties that you/school/health professionals seek dx in the first place. A list of difficulties is far easier to brush aside and say "well all children do that" than a formal dx. Of course people will still use the "all children" line, but you have with a dx the weapon for want of a better word that you will need to explain and explain and then fight if necessary should any difficulties arise in the future. And as Liz says, an autistic child/adult is an autistic child/adult - whether people try to muddy around who I am (often because of their own embarrassment) or be more direct, I am still an autistic person in need of particular support at particular times. Knowing that I am autistic allows me to identify my weaknesses and work on them better without beating myself up for being a 'bad' person.

 

SS in our area will not provide help if diagnosis is Aspergers, but will if the diagnosis is Autism or ASD.

Awful but true. And the worst part of it is that AS is an autistic spectrum disorder. It is just as accurate to describe me as being aspergers, being autistic, being on the autistic spectrum. I think that there is some disagreement over these things, but really HFA/AS shouldn't be distinguished and to distinguish is actually false. It's almost like saying "well not to worry, he/she's only AS, that's not 'real' autism" (I hope I haven't offended anyone here). AS is autism and professionals and the more general public need to understand this.

 

Yes there might be inheritance among his children but it is not a life threatening condition and I believe it is completely wrong to stop having children if you are asperger

I don't think that's what the test in question here is for. The decision of whether or not to have children is a highly personal one and many many factors come in as well as Asperger's. Some people with Asperger's choose to have children, some don't. Just as for the general population. I hope that if I decided not to have children people wouldn't think I was doing so because of the strong possibility of them being autistic. :(

 

For what it's worth, had I been dx'ed as a child, I would have wanted to know the dx and what it means and I would have wanted my school to know too so that they could possibly have tried to help me. All of our situations are different and the context has such an impact on any outcome. I have no idea what my life would be like or where I would be now had I had a dx as a child - I suspect not where I am now because of different understanding when I was young.

 

If you're unsure, can you not have the dx of AS/ASD on your report and you choose as and when to share it with the school?

Share this post


Link to post
Share on other sites

We worried about seeking a dx for our eldest dd, she's 10, and was dx AS about 18 mths ago. She was, and still is, doing fantastically well at school. At her last parents evening, her teacher said her work was at secondary school standards. She has friends. She copes well outwardly....but scratch below the surface, and the difficulties are there. They are not as obvious as our younger daughter's, who is also on the spectrum, but I think somehow this can make it just as vital to make a dx formal. It was speaking to adults with AS, who had been diagnosed later in life, that prompted us to take it further, rather than just sit on it, and wait. We feel if the school are aware of any potential probs, then it makes our dd's life alot easier. They are able to understand now, why she may react a particular way. We feel comfortable approaching them about any concerns we may have, and we have a dx to help. Our main concern has always been secondary school. I've always had a real fear, lurking, that when she transfers to secondary school, her difficulties will become more obvious. I'm dreading the whole fashion, boys, cliques, bands, big school more opportunity to get lost, constantly changing classrooms and teachers that comes with it. We felt that if she was aware herself, that she was AS, than it could only be beneficial to her. For us, the fact that she appears to cope so well, made it more important to seek a dx....if that makes sense :unsure: Really does make me cross that less support is offered to those who are Aspie......surely AS is an ASD? I say both my girls are on the spectrum, yet one is dx AS and one with Autism.

Share this post


Link to post
Share on other sites

Thanks everyone for the replies. I think you are right in that the diagnosis of Aspergers isnt a negative thing. It has helped me a lot to know that it wasnt just me imagining his difficulties. The school say he is fine now and he is happy there although his behaviour after school is worse. He likes the routine and until he faces difficulties as I have been told he will particularly with English comprehension by the specialist speach therapist there is no need for intervention but I do feel the diagnosis is accurate. It is just that after being told that he didnt have the problems id described by the school and that it was just my parenting by my mum I was certain he wouldnt be given a diagnosis.

 

I guess deep down it is a relief to know that there is a name for his difficulties. Thanks again everyone.

Share this post


Link to post
Share on other sites
Oh dear I am very sorry indeed if I have said the wrong thing.I did think when I posted that I was not sure how to word the post. :tearful::tearful:

I did not intend to give the impression that I in any way think that the possibility of AS is reason to avoid having children.

 

I was thinking that that might be why you were being offered Genetic testing.If it is why then it is very obvious that you would not want it. >:D<<'> Karen.

 

I didnt think you gave the impression that you though it was a reason not to have children, I am more concerned about the NHS and the way this nanny state is heading they may well do in the future.

I have definitely decided against the genetic testing and will leave the decision to my son when he is older. Looking at symptoms of fragile x, I think that it is unlikely that he has it and am certain it would cause more trauma than the possible benefits of knowing.

Share this post


Link to post
Share on other sites

I for one think you are making the right choice because if I had known what I know now I would not have it done on my son. He nearly passed out whilst they were doing it and was very subdued for a long while after.

Share this post


Link to post
Share on other sites
I for one think you are making the right choice because if I had known what I know now I would not have it done on my son. He nearly passed out whilst they were doing it and was very subdued for a long while after.

My son was the same, he went ever so brave but it was too much for him and keeps talking about it several months later. That blood test was 100% necessary since it was believed he had meningitis. Thankfully he didnt but it was looking very like it so I think they did the right thing persevering to do it. Even the doc who referred him couldnt see the point of it so it is hard to see how it is worth it. It would just be reinforcing his current fear of hospitals.

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...

×
×
  • Create New...