opinions re diagnosis

[spottydog]

Hi all, haven't been here for quite a while. have a son now 13yrs, diagnosed about 6yrs ago with AS, he struggled through junior school and was very depressed/suicidal at times, however at his secondary school they seem to 'get' him and really embrace his differences. However, my dilemma is now regarding my daughter. she is 11yrs old and has also struggled through junior school with anxiety/friendships/school refusal/not understanding teachers etc, after many years of seeing Community Paed/CAMHS/relate counselling (all pretty unhelful!) she finally got referred for a Speech and Language assessment, where the therapist felt she easily fitted diagnosis of ASD. Then went to see Cons Paed who said we now need to decide whether a diagnosis would be helpful, bearing in mind that she has now started the same secondary school that my son is also thriving in.

It didn't really enter our heads that we would be given an option of whether to 'label' her or not, I feel like we have been fighting for appropriate help for her for so many years, but maybe she won't be so distressed now that she will be getting better support in school. she continues to eat compulsively (and is very overweight), but her general anxiety levels seem lower and she has stopped 'tic-ing' since being at new school.

I still feel it would be helpful to have a diagnosis so that she can access support if needed in the future, and certainly for my son diagnosis was incredibly helpful - he is very proud of his AS. She just wants to fit in with her peers and does not want to be 'different' - . have explained that she would not need to tell anyone if she chose not to, but what are the downsides in the longer term and adult life if we do decide to 'label' her with the diagnosis?

[positive_about]

I would say try and get a diagnosis if you can, she does seem affected and may need support later in life - teenage/adult years bring out lots of challenges and change, so she may have difficulties later on that she needs support with. To be honest, I don't really see a downside to getting a diagnosis - its a positive step in itself, and may also open doors later. She may not want, or need, the label - but she may need to accept she is different one day, and come to terms with it.

[spottydog]

Thanks for your thoughts Tim. I think diagnosis can be very useful, and as I said previously, for my son it was very welcome as it has helped him to understand and embrace his differences. I can't really think of any negatives from having a diagnosis, thats why I was puzzled when Paediatrician said we need to decide whether to have a diagnosis or not. To me, if she chooses not to tell anyone, either now or later in life, surely thats her decision. But are there situations where she would be obliged to disclose a diagnosis? I thought Disability discrimination laws protected against this??

[positive_about]

As far as employment goes, if I recall correctly, you don't need to disclose though its probably a good idea if there are any obvious difficulties - if she doesn't have any difficulty working then she need not disclose it. Employers that are disability friendly ('two ticks') will actually guarantee an interview if you meet the minimum criteria - so clearly there is an advantage to disclose then. It really does depend on whether she can work without any hinderance or whether 'reasonable allowances' need to be made, in which the employer would need to know.

 

In other areas of life there is/may be a legal requirement to disclose, such as a driving licence if your ability to drive is impaired (this can apply to some autistic people).

 

You may want to get some advice about disclosure, the National Autistic Society is probably a good place to start.

[Sally44]

I don't think you need to disclose. But if you then claim some kind of disability discrimination, your employer is going to say that, at the time, they did not know that they had a disability.

 

It is a hard one. I think it depends on what type of help and support you think she will need in school and as an adult. My son was diagnosed at 6 and he is now 12. I did think it was unfair, at the time, that he had to get the diagnosis to get the help he needed [and although everyone said that was not the case, it actually was, because part of getting a Statement of SEN involved having all of his 'needs' diagnosed and he has multiple and complex needs eventhough he is around average cognitive ability.

 

But for my own son, I believe he is going to need ongoing help and support as an adult. I would like to think he might find some kind of work he enjoyed, but as he also has OCD and dyslexia to name just two other things, he is going to need substantial support both in the home and at any kind of work environment.

 

Having a diagnosis does not mean you have to wear a neon sign above your head.

Edited October 13, 2013 by Sally44

[scumble]

Well I would say it should be considered similar to any other incurable condition that can affect functioning in the normal world. It is probably more useful for children to gain the support they need, and I think you can technically reverse the diagnosis if your daughter is not continuing to have problems.

[Shnoing]

Difficult one: I'm glad that my son has gotten his dx at age 3, on the other hand I'm glad that I didn't get my dx until after my doctorate: I haven't made any progress (job-wise) since then.