Pros and cons of formal diagnosis

Hi.

My younger daughter is 15, and has problems with anxiety at school.  On reflection, she has a number of traits that fit an Asperger's type profile closely, and has had since childhood.  She's been referred for assessment with a view to that diagnosis. Our anxiety is that currently, she's a geeky girl who's a bit awkward socially, and has some anxieties, all of which are either within a normal range and/or she could expect to grow out of.  Once she's diagnosed, she will be considered to have a lifelong condition which can not be cured. 

In my family, lots of us (including me) have Asperger's-type traits, but none of us has had a formal diagnosis, and we've all grown up to be happy, working, having families, and maybe remaining a bit nerdy and shy, but that's all. Once we've escaped from the pressure-cooker of secondary school and have been able to choose who we spend our time with, and what we do, none of us has has significant problems.

I'm concerned that with a diagnosis, although my daughter will get help for the significant difficulties she is having at school (these centre around anxiety attacks and stress- she is doing really well academically), she will also become very difficult to employ for the rest of her life.

I'm not clear who would have to be told in future about her diagnosis.  It is likely to affect her in getting a driving licence, or insurance for her life, health, mortgage or travel? Would she have to put it on a university application? Job applications?  

She's lucky to be clever and I am fairly confident that she could learn to fake being neurotypical well enough to manage... so I'm not fully convinced that she'd be better off with a formal diagnosis than she'd be knowing what it probably is and doing a whole lot of reading about coping strategies.

I'd appreciate your thoughts...

Thanks!

  • I understand your concerns. My son is 18, diagnosed at 12.

    Now he is 18 it is entirely up to him who he tells.

    While he was at school it really helped him. He also got a Statement at 13.

    It is not the diagnosis but the effect his AS has that counts. He was rejected by the Army and AS was one of the reasons, but it was not the diagnosis itself but the fact that he had taken medication to help him. Some people with AS do join the forces.

    As far as University goes having a diagnosis opens up support because they have to make reasonable adjustments to help people with a disability.

    As for driving they ask you if you have a disability which you consider will affect your ability to drive. My son put 'No'. He is having driving lessons and they seem to be going OK. The instructor knows of his disability and he has not mentioned any problems.

    For us having a diagnosis has been advantageous.

  • Hi there . I have a son who is now 19 who was diagnosed at 17.

    The diagnosis helped him confirm that he difficulties  were not his fault , just a function of who he is.

    If I were in your position and had a chance to get a diagnosis for your daughter , and she was happy to go for it too, I would. I see it as an isurance policy - you can use that diagnosis when you need to and tell who you want to.

    If she has anxiety issues now, she may continue to need help with these through 6th form and uni if that's what she wants. For example she may be able to take exams in a room on her own rather than in a crowded hall. Extentions for coursework will be more easy to get if required

    It won't affect getting a driving licence - my son has his already. We were able to claim DLA for him becasue of his difficulties which contribute to his driving costs - driving is much less stressful for him that public transport as he is in control.

    You don't have to make a big thing about it on a university application - but it may help you if you do.

    For universities it will give you access to extra support in terms of a mentor/ and or equipment, plus special consessions like being able to stay on campus all through the course. My son actually has a lower grade offer because of his disability , which takes the press ure off a bit ( although he is determined to get the true grades) My son mentioned his aspergers in his personal statemtn - becasue he feels it has shaped him to be who he is - and for the course he is ding his aspie strengths are very relevant ( electronic enginnering - a lot of pure logic is involved in this).

    For  employers some have a policy of always interviewing disabled candidates if they meet the minimuum criteria. It also gives the employeess protection as the employer has to make reasonable adjustments.

    Reading posts on here its much harder to get a diagnosis as an adult. If she leves it til later she might find it harder.

    I can't see how the diagnsis would affect a  mortgage and our travel insurance people didn't wan to know.

    As a matter of fact , someone who has had cancer but fully recovered would also be classed as disabled . It's not the label of disability which will hold her back - i beleive it would allow her to access significant extra help throughout ther life should she need it.

     

  • This is really helpful information. Thank-you.

    It's so easy to find examples on the internet of people with diagnoses and good degrees who still can't get work, and that's *mostly* what concerns me.

  • I feel on the employment in the future issue that just like marrying up with the right school, it is the same for employment.  As she is so young if she has any specific interests self employment may be a way forward, with your support.  Self employment can start out very small - sometimes as a hobby and then turn into something which will give her money and a profit.  Many people with mental health support needs find they can do some work self employed under therapeutic earnings and still keep some of their benefits if they only worked say less than 16 hours per week.  This allowed them to manage their anxiety and then slowly build up to full time.  I do not know with the government cut backs that this still exists but there should be some system in place to support your daughter.

    In relation to future job expereince What I would do as a parent would be to use the existing networks I have at my disposal to see if I could get her a work experience as a taster to the world of work, with a trusted friend if possible for initially parts of a day then build up to a full days work.  Voluntary work during the summer holidays is also a good way to start work type experiences for her - again not full time I would say.  This will add to her CV and life experience and enable any transition to be at her own pace and in her own time.  She sounds a lovely young woman and clearly has a loving family behind her which is half the battle! Good luck x 

     

    PS - on diagnosis - I am feeling the same as you even though my son is only 6, but hey if it helps - then what the heck I say! You can't have too much help these days!

  • I was diagnosed late (age 21) and wish I was diagnosed as a child, preferably before the age of 10. I now have severe anxiety and OCD issues, all because I did not receive any support with my information processing difficulties (which is the core behind all Asperger traits in my view) as a child. My parents were equally worried about my future prospects, and this is partly why they were so reticent about pushing harder for a formal assessment. They now regret their decision, and so do I.

  • Thanks Hope - you have made us understand that what we are doing (going for the diagnosis as quickly and early as possible) is the right thing!  We are doing this out of love and despite our reservations as to how this will all unfold, at least I suppose we are doing something!  xx

  • Thanks everyone- I'll talk to CAMHS again.

  • a diagnosis can be a support on the life path, it will help manage the environment symptoms of Autism,  instead of using up adrenalin and hormones of the body and getting depression and breakdown in later life. Aspergers has great strenghts only in good environments suited to the condition. Without the diagnosis, support and learning, autism life becomes just a lottery in an ever changing world.

  • I can pretty much say a diagnosis saved my child.  Without it there would be no self esteem, so self-awareness of issues, ......

    As for future employment, there are some companies (expecially in the sciences and IT) which not only are supportive of those on the spectrum, but appreciate the unique skills that many on the spectrum have.  Yes, there will be those who will discriminate, but your child probably wouldn't get on well at those places anyway.

    The diagnosis will not change other people.  It won't necesarily give you access to services, and it won't necessarily make teachers any better at interacting with her. But what it can do is give your child a reason why they are different so that they do not feel bad about themselves.  It can also help explain to them why they find some aspects of subjects they are brilliant in otherwise, very challanging (such as being brilliant in literacy except for some reading between the lines reading comprehension).

    Another benefit of the diagnosis is that for the rest of her life she will have an extra legal layer of protection.  As it will be illegal to not hire her just because she has ASD,  reasonably adjustments will have to be made for her, ........

    But in the grand scheme of things, no one other then her ever need know she has the diagnosis.  It will just be there for her when she needs it.

  • I'm about to copy and paste this thread to Panda's dad so he can have the benefit of your insights also.  Thanks again!