How Important is a Diagnosis

[Kinda]

My son was a statemented child and was given a diagnosis as being dysphasic. When he went to university he was re-assessed to enable him to get a special grant (not sure what that was called). He has always been against any "special needs" label until he realised he could get a special grant and more time for his exams.

 

I mentioned a few problems my son was having at university to a colleague at work who advised me to look into AS which his son had been diagnosed as having. I've become more and more aware that some of his traits/behaviours are very AS. The problem is that I have not mentioned AS to my son and knowing his views on wanting to be "normal" I have not discussed it with him and I feel I can't.

 

Does anyone see a problem with this? He is in his mid 20's and has suffered from relationship problems, stress, depression, communication etc and we have helped by providing him with help were we can.

 

He now has a job and his company are not aware of any problems he may have and his AS traits are not severe but do affect him all the same. I can not see any reason for giving him yet another label so we have not raised it with him but not sure if we as parents are handling it correctly with him. I still search the web sites and read as much as I can to help him.

 

Recently we have found a therapist to help him with relationships, depression etc and he seems very happy with it so far. So the reason for the posting is to ask others if we are doing the right thing by not putting yet another label on him (since we know he will have an adverse reaction to any suggestion of AS) and knowing that we are still trying to deal with his problems regardless of the AS label.

 

He's now finished his education and so I guess its down to us as parents to help provide any specialist support he needs. His special needs requirement report was carried out about 5 years ago and made no mention of AS.

[Kathryn]

Hi Kinda,

 

I'm also the parent of an adult and recognise a lot of the issues you raise. Although in our case my daughter had an official dx at 15, she is now very against having a specific label attributed to her. At first she welcomed the diagnosis and actively pushed to get it. It was a relief to her to learn that she was not crazy or stupid or a freak because she didn't think or feel like other people, and there was a name for what she was. From there she went to complete rejection of the diagnosis, and now seems to have settled somewhere in between: she accepts that she is on the spectrum, but vigorously denies that AS/autism is the reason for everything she does, thinks and feels, and gets angry with people who try to put her into that category. She demands that people recognise her needs, and she will readily give people a list of her difficulties, eg visual, coordination, auditory processing, hypermobility, but she will never use the terms AS (which she rejected a long time ago) or "autistic".

 

All this sounds very reasonable, except that as a parent it's difficult to know what kind of support to provide or how to help her access support that is available from others. She won't tap into any kind of support service which has anything to do with AS, which means that I can't directly access such support either (which cuts out anything the NAS, or local autism support groups might offer). Sometimes I watch her floundering at college and trying to get her needs met and I think it would be so much easier if she mentioned ASD. I can understand that she wants to be treated "normally" - but if things went wrong I would feel easier if people understood and didn't attribute any "strange" behaviour to other causes.

 

It sounds as though you are doing a great job in the support you're providing, and you must be proud of your son for what he's achieved, and the way he's coping with difficulties. Whether a dx would be further helpful, only he can decide, I guess. If he has an adverse reaction to the mention of AS, it might be helpful to leave one or two books lying around - there are some very good autobiographies written by people with AS. If he does get as far as reading them, something might ring bells. My daughter has read just about everything she can, and it has all helped her to understand herself a lot better, in her own time, and realise she's not alone. Obviously you can't force the issue and I'm not sure as a parent, there's much more you can do - except be around as a safety net. Support in the end is always down to the parents. Even with a label, the hard truth is that there isn't much official help around - especially for high functioning adults. So the best we can do, I think, is help our children learn strategies to cope with the world out there when we are no longer around for them.

 

K x

[Karen A]

Hi Kinda.I thought it worth mentioning that one of the areas for adults that has cropped up on the forum is access to therapy and counselling that is helpful.If you have found a therapist that your son is getting on well with and is happy with then you have done a very worthwhile thing even without the AS diagnosis. <'> Karen.

[Kinda]

Hi Kathryn and KarenA

 

Thank you for your time and advice.

 

My son is well aware that I have books on AS and so I know he will have researched it on the net. The AS label has helped me in that I now understand his difficulties but I still get caught out!!!

 

We had terrible trouble when he was at school and his first university and had we known more about AS then we could have helped more I think. Anyway we are now having to guide him with regards to his job and the complex relationships that work involves and in this area I'm unfortunately not a good role model for him and rely on my wife for the political savvy.

 

If there is limited help then there seems little point in having it confirmed or not, understanding more about AS and the difficulties that can occur has helped tremendously but of course you can't be there at their side all the time.

 

At his recent 2nd degree ceremony (sorry about being slightly boastful but I'm so proud) they gave a student a prize for the most improved student and there was my son who had I guess had to work so much harder, on his own , deal with the difficulties and I just thought the university and tutors just don't understand do they, a young man who had to have special educational support to help him talk when he was 6 years old.

Edited January 5, 2008 by Kinda

[Karen A]

I think you must have been really proud Kinda.Karen.

[chriswheels]

Hi,I`m new!

 

My son was recently given a formal diagnosis of high functioning autism at the age of 22! For years we put his difficult behaviour down to childhood epilepsy and made that " the excuse", for everything that went wrong in his life! My husband (who suffers with severe depression), insisted our son went to college to learn a trade,after leaving school aged 16. Our son did learn a trade,but has had the sack from "so many jobs", EVER SINCE!

 

Since the diagnosis,out son feels so relieved there is a reason for the way he acts and feels. I just feel I`ve let him down and should have sorted something out, years ago!

 

Feeling badx

[Tally]

Hi Chris, and welcome to the forum.

 

I don't think you need to feel bad about anything. You do what seems right at the time.

 

Hopefully now you can look to the future, and perhaps into more realistic work.

[Karen A]

Hi Chris Welcome to the Forum. <'> I thought it worth mentioning that because awareness has increased in the last few years there are probably many adults around now who if they had been children or teenagers now would have been picked up.So please don't feel bad that you did not know sooner.Karen.

[dooday24]

hi chris and welcome to the forum

love donnaxxxxxxxxxxx

[ScienceGeek]

Hi Chris,

 

As someone else said, don't feel bad about it. They are better at picking these things up now, not just ASDs but SPLDs as well. I'm 23 nearly 24 and was only just dx with dyspraxia and dyslexia last year and still awaiting assessments for poss AS. I'm sure you will find lots of information on here and the people are very friendly.

 

Jack

[Kinda]

Chriswheels

 

You are not alone, my son is now 24 years old and it was only some 2-3 years ago and after talking to a friend at work whose son is AS talked to me that he seem to meet a lot of the criteria. After more research into it it dawned on me that all the instances in which we thought was just being a teenager and him being a bit difficult I gradually realised that AS may have been the reason.

 

The label of AS has helped because I now understand why he behaves the way he does (he is not sever compared to other AS people), and we now try and help him and guide him and just be there for him.

 

But when I look back I often ask myself why we didn't realise before, why has it taken so long and how could we have missed it, what were we doing not to see it?

[chriswheels]

Dear All

 

Thank-you so very much for making me feel so much better, about myself! I still feel bad my son didn`t have an earlier diagnosis,as maybe he would have had a lot more understanding throughout his school years...... AND ....in the work place! Poor him, he was always in detention at school and classed as "disruptive and silly" throughout his school years! WHY didn`t..... "I pay more attention"?!? BAD MUM!

 

Everything is falling into place now and feel my husband`s depression, took priority.....BUT NOT ANYMORE!

 

Chat soon,Chris