Diagnosis?

Hi,

I'm a 21 year old girl, currently studying at university. For some time, I've thought that I may have autism, and my mum agrees that I've shown autistic tendencies since early childhood. Some of my friends also agree that I display behaviours associated with autism - and my best friend, who was diagnosed with Aspergers as a child, told me that I am exactly like him. However, I've never had a diagnosis, because as a child my mum apparently decided I was fine as I was and did not need any support. I was wondering if anyone here was in a similar situation and if people had found a diagnosis to be useful to them, or if it is simply a label which is a pain to acquire and not much use afterwards.

Thanks :)

  • Hi there!

    I can certainly relate to what you've said, and being a similar age means we've probably had similar experiences at the same time but not known it! A couple of people mentioned the possibility of me being autistic, and I hadn't really considered it at the time. But a year later, a psychiatrist mentioned it again, at which point I started to really consider if I was autistic. I mean, it did explain why I found mixing with other children hard when I was younger, but at the time I admittedly had a fixed perspective as to what an "autistic" person looked like. Recently, I got an internship for my gap year, and discovered more issues that had to do with autism. I'm currently being assessed for it, but am pretty much convinced that I am autistic at this point. 

    As for my parents, they thought I was fine, and to be honest, I thought I was too so I don't really blame them for not seeing it. As it is, none of us were that educated on autism, so I don't think I'd have picked it up any sooner! Anyways, what's important is that I'm doing something about it now.

    For me, my experience of diagnosis has been an empowering one. Being able to put a name to a group of difficulties allows me to make sense of things, and help others understand. Having the diagnosis also gives me the confidence to speak out about it, and help more people understand issues like mental health. I think getting the diagnosis for autism would have the same effect on me.

    Of course, this is just my experience - there are examples of people where it hasn't gone as well. But you can't really predict what your experience will be like until you get the diagnosis. Personally, I think you should definitely see someone about it - at the very least, people around you will understand more about what you find difficult and help you, and work managers will help to accommodate your needs so you can work as best as you can!x

    Much love <3

  • Well, I've got a good few years on you (47 year old woman) and I was only diagnosed last year with Aspergers. Personally, I have found the diagnosis very useful. It is easier to come up with good, workable strategies for handling your difficulties if you know where they are coming from, for a start. It also allows you to make sense of why you are how you are.

    I have managed to lead a pretty successful life (freelance programmer ... yeah I am a walking stereotype, Aspie geek chick) but I do think that if I had had the diagnosis at your age, I would have been able to play to my strengths even more. I would probably also have wasted less time on things that were never going to work, or make me happy.

    Knowledge is power, as they say, and I think entering the next phase of your life armed with a far greater understanding of yourself can only be a good thing. That's my two pence worth anyway!!

    Best of luck with whatever you decide

  • Hi there,

    I got my diagnosis nearly 3 years ago now, at the age of 56.  It was one of the best things I ever did.  Suddenly, my whole life made sense to me at last.  I wasn't 'wrong', just different.  I could understand why I failed at school, yet went on - at 28 - to study for a degree.  I could understand why, in spite of many problems that got me labelled as 'thick' at school, I had an IQ that got me into Mensa. 

    I, too, didn't really need support as a child - even though I was far from a 'normal' child, preferring lone activities to going out with friends (and not really having friends, anyway), and being obsessive about things like tidiness, lights, water taps, etc.  I've never needed support as an adult, either - except, pre-diagnosis, when I had mental health problems that required the help of therapists.  My mental health has also improved since diagnosis.  I live alone and manage alone.  I'm self-reliant.  I don't need anyone else in my life to guide me, support me, advocate for me - or even, come to that, love me.  I can manage.

    To anyone in your position asking your question, I'd say - every time - take the test and go for diagnosis.  And if you're afraid of a label, well...

    All the best,

    Tom

  • Hi.  I’m 37 and do display a lot of the behavioural characteristics associated with Aspergers.  I have debated the same issues you have described.  

    I emailed the people involved with the assessment and they said:

    “I can understand that it can be quite daunting to ask for an assessment and go through the assessment process. It might be helpful to talk it through with your GP. Some people say that being given a diagnosis has been helpful as it gives them an explanation to why they have certain problem through-out their lives.”

    If I was as switched on at your age I would go for the assessment. Yes it is a label but you can’t put a price on peace of mind. 

    My appointment to get the ball rolling with the GP is in a couple of weeks.

    Best of luck.

  • In the interests of honesty, openness, balance and fairness...

    ... I'm one year post-diagnosis, and it was (so far) one of the worst things I've ever done. I suppose it was because autism wasn't even on my radar before, so suddenly going from 'Neurotypical' to 'disabled' was one helluva shock. That has meant a year of trying to manage the negative connotations and labels I had of autism prior to being diagnosed.

    And, I was essentially diagnosed and then kicked out into the big bad world without any appropriate supports. Indeed, since finding out, I've been utterly shocked at a) how wholly lacking the medical profession is to deal with late-diagnosed adults, b) how superficial supports are within the workplace, and c) how even the most well-meant of intentions from non-autistics often falls cringe-worthingly short (they just don't get us).

    It's been an educational yet difficult year. And looking back with hindsight, I think I would rather have not known. My confidence has taken a massive knock, and my vulnerability has increased - all the while whilst I'm meant to accept this new diagnosis, yet have no idea how to get my head around the complexity of it all.

    Many people on this forum praise autism and how unique it makes them. They're better than me, and I'm honestly glad they've found a way to reconcile and thrive with autism. For me though, I still have no idea how that is done.

    I don't say this to be overly negative or a nay-sayer. I just want you to go into this with realistic expectations that getting a diagnosis is not always a positive thing for some people. As such, I always advise caution. Once you've got that diagnosis, there's no going back.

    My advice to answering your question would first be to ask - why do you want the diagnosis / just what do you hope to get from it?

    You're admittedly younger, and modern universities likely have better resources to help support young autistic adults than typical traditional workplaces. Plus, you're already considering autism from a personal perspective - as well as having an autistic best friend. So, you've probably gotten more familiar and comfortable with it than I ever was. So there is a good chance you'll more easily turn this into a positive for yourself.

    But, just tread carefully...