Parent opinions on positivity of getting a diagnosis please :)

Thanks for your kind reply. Sorry I didn't reply sooner but I am currently a man with a bad cold and thus feel close to death.

I don't see things quite like that as doing the learning part of education has always come fairly naturally to me so for me continuing in education was sort of a path of least resistance in which I tried to stick to what I knew and was familiar with for as long as possible. In the interest of fairness I should also say that I live reasonably close to the university and so did not need to move out or anything - I treated it almost as a continuation of going to school and didn't do any of the other stuff. I am kind of at peace with understanding why I may have felt this way and needed to do it that way at the time now though.

I would say that others have made valid points the other way also since I posted. I think realistically all you can do is weigh the experiences people have given here with what you know about your daughter and do what you think will be best. There is a saying that when you've met one autistic person you've met one autistic person so in no way should you take anything anyone says here as written. What may be crushing for one person to learn might be handing another the keys to their life. 

Thank you Kras83 for your kind reply.  It’s good that you have more clarity now as you are on your way to getting a diagnosis.  You’ve done so well to get to uni and actually to go for your degree course a second time shows complete STRENGTH and not an iota of failure.

With everything I’m learning / reading / researching  I will use that knowledge and the stories of others to support my daughter and hopefully other people when I can.  Yes I will empower her, thank you.  She too struggled from primary to secondary but is still only 12 so I am getting a support network in place pre-diagnosis.

I wish you all the best for your diagnosis and for your future, you have been so kind to respond and to share your story and from all you have said in your message I can hear you are brilliant and strong, I hope you get all the support possible. 

Thanks again and all best wishes x 

Dear Proud Snowflake,

Thanks so much for your lovely, positive and supportive message.  Wow, you sound amazing and congratulations to you in all your achievements. They are huge achievements, you’ve taken everything out there available to you and gained so much. You know this already. This is brilliant to hear.  I am hopeful for my daughter and I will help her all I can, I just want her to be happy and believe in herself and I hope that she will have an independent and happy life.  She loves English literature, writing, drama and art so we encourage her in all her favourite subjects.  It seems the diagnosis will be a huge support to her and my family I am pleased to hear the university have supported you so well.  Thanks again for your time in replying and your kindness.  If there is a way to send a DM or private message with a link to your poetry I would love to buy a copy.  I’m not the best technologically minded person!

Anyway congratulations to you and thank you again and all best wishes to you for your exciting adventures x 

Hello, I'm not a parent but as someone who is waiting for diagnosis at 36 but has had difficulties that they did not understand through a lot of their life maybe I can provide some useful input.

I had a lot of trouble with anxiety once I moved from primary to secondary school and developed irritable bowel syndrome which resulted in a lot of time off school and a move from grammar to regular high school. I was never a total outsider as such but struggled to do more than hang on the fringe of 'the gang' and looking back I would say that I tended to have one good close friend at a time, but that I was also used heavily by those close friends (eg one stole from me but I tolerated it rather than confront). I had a lot of trouble transitioning to University and panicked and left in the first week on my first try, I only managed on my second try when my brother was going at the same time to the same department. I have since struggled to get a job and last for more than a few days before turning into a tearful mess and spent most of the time since University off sick whilst believing that my problems were all a result of Generalised Anxiety Disorder, and therefore that any treatments I received should work in some way and help me be 'useful'. The frustration of repeatedly failing did cause some serious self blame issues and self hating and sometimes suicidal thoughts, as well as repeatedly trying and failing made it harder by making me frightened to try again.

Now if that all seems dire please don't be scared, I'm not trying to paint a bleak future - everyone is different and this is entirely from the point of view of someone who had no idea for most of their life. Reading other peoples stories from similar situations has helped me immensely and given me hope that there may be a good reason for everything.

The fact that you are on the diagnostic path now means that you at least suspect and so even if you chose not to go through with it there will always be that fallback possible explanation. Just from my position I would say it would be better to have a diagnosis as early as possible simply because there is more help and support available during that period of life. There is no requirement for you or your daughter to go around telling everyone if she does get a diagnosis but think of it maybe as something that will aid access to support if it should be needed at places like University.

Struggling without knowing why is a horrible and almost maddening experience. Knowledge is power and understanding yourself can help so much with happiness, you will just have to help with the direction this self knowledge takes eg: Steering it towards empowering and away from "you are limited".

I hope that is helpful 

Hi, Mum on a mission :) I found getting a diagnosis at 15 very difficult and have really suffered from mental health issues, but I am now at university and the diagnosis has meant I get the right accommodation and someone to contact if I'm ever struggling. I actually took to university like a duck to water and have needed very little support because I was naturally ready to go. I may have started slightly later than a lot of students - last year, when I was 21, nearly 22 - but that's fine; there are plenty of neurotypical young people who aren't ready to start at uni at 18 for all kinds of reasons. I now live VERY independently, in a studio flat where I do all my own cooking and cleaning and washing and shopping, I balance my academic and social life well, I have some lovely friends. I don't want to show off but I just want to give you some hope that people on the spectrum can achieve good things: I'm a writer and have had a short collection of poetry published by a small press, and I'm moving to Australia (alone) to study for five months come February as my lecturers recommended me. Being diagnosed as on the spectrum isn't a walk in the park, and your daughter will most likely need plenty of support from you and perhaps professionals throughout her life, but hopefully the diagnosis will help her understand herself and as you say, get her pastoral support etc. I have really struggled in the past but I now seem to have (mostly) come out the other side as it were, and I lead a very full and exciting life. All the best to you and your daughter.