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Finally a diagnosis for my daughter @ 18 yrs old

Denise63

Hi everyone - I've been on the message boards a few times over the years as we were struggling to get a diagnosis and help.

Finally we got some help for my daughters anxiety and referred for an assessment which has come back as a diagnosis of autism (high functioning). 

Its something we've battled with for years trying to get medical professionals to listen to us. It changes nothing in our family unit as we all knew including Amy in the latter few years what exactly the issues and daily challenges were that she faced. A diagnosis simply confirms it.

So please - never give up on going for that diagnosis if that's what you want. It's a struggle at times and I found I had to repeat myself many times to different people, & passed from pillar to post constantly over the years!

Its actually a relief for Amy, she now says she understands so much more, she reads about Aspergers, she talks about the many people she knows who has it at college. I can honestly say it's helped her since knowing.  She hasn't told anyone as yet and still feels awkward to say anything about it for fear of people seeing her differently but I will leave that up to her to decide. 

Im wondering what reactions as a teenager or adult you faced when telling people you or a family member has autism / Aspergers?

Xxx 

  • Former Member
    Former Member

    Hi Ells,

    Totally agree with Blossom's advice. It is essential to convey the fact that having autism does not imply mental disability. I worry about the impact of the autism label on a teenager - perhaps you should suggest Asperger's first?

    If your son has ASD then have you considered whether he got this from a parent? Would it be easier to broach the subject if it was clear that it just meant that he was like his mum or dad in some ways? There is a free test at aspergerstest.net/.../

  • Hi Ells,

    We talk to our grandson constantly about his ASD and what it means. He was quite young when first diagnosed but even then he felt a sort of relief and very quickly an acceptance of it. If you stress to him that ASD has nothing to do with intelligence so you can be very clever and have it, and that it gives you lots of special talents as well as some challenges. Our grandson likes to the look at the list of very famous and learned people who are suspected of having had it. You may find that he is very relieved to find out the reason for the way he thinks and behaves.  Its probably better to wait until you get a diagnosis before you mention ASD specifically but you could chat with him about how he feels different from other youngsters.

  • Ells said:

    Hi - I am new to this site. I a have sat here for the past 2 hours looking at the web and wondering how I can help my son. He is 16 and up until 3 months ago we suspected nothing. Now after a couple of stress episodes over exams I have read lots of information and I am sure he is on the spectrum. I have mentioned nothing to him because I fear he will react badly to me suggesting such a thing. We have taken him to the GP as  he said he was depressed. 

    I have discussed things with various people - some agree with me others say it is part of being a teenager - as a mum I recognise so may traits.... hygiene issues, no pattersn on T shirts, same place for holidays, will not leave his bedroom unlees for school, only the same shower gel etc etc etc. 

    Not sure now if we talk my thoughts over with him or just try modyfying our own behavious and expectations?

    Discuss this with the gp and see if he will make a referral for assessment.

    you didn't mention much on the communication side. This is essential for a diagnosis.

  • Hi - I am new to this site. I a have sat here for the past 2 hours looking at the web and wondering how I can help my son. He is 16 and up until 3 months ago we suspected nothing. Now after a couple of stress episodes over exams I have read lots of information and I am sure he is on the spectrum. I have mentioned nothing to him because I fear he will react badly to me suggesting such a thing. We have taken him to the GP as  he said he was depressed. 

    I have discussed things with various people - some agree with me others say it is part of being a teenager - as a mum I recognise so may traits.... hygiene issues, no pattersn on T shirts, same place for holidays, will not leave his bedroom unlees for school, only the same shower gel etc etc etc. 

    Not sure now if we talk my thoughts over with him or just try modyfying our own behavious and expectations?

  • To answer your question at the end

    When ive mentioned it to people, ive had comments along the lines of "whatever" or "thats just an excuse".

    The other issue has been people not knowing what it is, googleing it, and finding a youtube video of someone with severe autism. Trying to explain to them that its a spectrum condition, and just because im not like that person, doesnt mean i dont have it tends to fall on death ears.

    Although not officially diagnosed, aspergers was mentioned as a possibility as a child. Im now awaiting an assessment as an adult. Im certain ill get diagnosed as being on the spectrum, even if its at the higher end of it. 

  • I'm a late diagnosed adult with two children on the spectrum. I too, took sometime to discuss it with others, but the overwhelming feeling for me; post diagnosis, has been positive. A chance, one hopes, to make a better life for the later part of it. (I'm 50)

    I'm so please your daughter has the answers she needs to move forward. I always think that knowing is the best position to be in to look at strategies for the future.

    Well done

    Coogy.