Diagnosed a month ago - umm help?!

I got a diagnosis a month ago, it was a long time coming. me and my family had our suspicions for a while. Last summer I had an assesment and the result came through in January. Initially the assessor said he was on the fence about it and said well either way i'm not "normal". In the end they decided I was on the spectrum; Level 1 and High functioning.

But now i don't know what to do. It's unsettling because i'm seeing lots of things in a new light, and am able to get that, for example, i'm freaking out in this situation because i'm autistic and my brain is wired differently to other people. But that is about as far as my understanding goes. I'm wired differently. But it still scares me because it's a big thing to get the hang of. (and i don't like change!)

I live at home with my parents and 12 year old sister. She's a normal pre-teen and when she acts like one, i find it difficult sometimes. I don't know what she makes of my autistic moments, sometimes i feel she acts like it's just a quirk, other times she's unsympathetic and talks to me like i'm a toddler when i get upset about some of her normal adolescent behaviour. (moods, ignoring me, being inscrutable etc.)

I don't really know who to talk to. I have two online friends who have autism, but i don't feel comfortable or socially confident bringing it up. (they have their own troubles anyway) and i'm also concerned my parents don't know what to do either.

Both are really really loving and supportive, (when i got diagnosed my dad said it was like having superpowers) my mum tries to be patient with me, we even joke about it sometimes, but sometimes she gets frustrated at me too.

What do i do?!

Help please anyone!?!

Mimlysanda over 8 years ago

Thank you so much, this is really reassuring to read and makes me feel a lot better.
You and your daughter sound like inspirations to us all!
Geoark over 8 years ago

Hi Mimlysanda,
If you don't mind I would like to give you the same advice I gave my daughter when she got her diagnosis.
1st, it doesn't actually change anything, you are still the same person as you was before testing or before the diagnosis.
2nd, we all have challenges in life, yours are a little different to most people. Understanding those challenges gives scope to learn how to meet those challenges.
3rd, it also gives you strengths and learning to use your strengths can help to compensate for some of the downsides of being autistic.
From the age of three my daughter said she would go to uni, she did and came out with a first. When she was 15 she decided to organise a charity gig, it took her 9 months to raise the money needed, identify a venue who would only charge her for the staff wages, get four bands to play for free, work with a consultant to put together the publicity for the event and for the event to happen. When it came to introducing the first act she stood on stage and froze. Three quarters the way through the night we shared the stage to tell everyone about the charity she was supporting with a lot of father/daughter banter. When the representative from the charity spoke most of the people were shocked to find out her age and she had autism.
She has a small group of very diverse friends, all of whome are fiercely loyal to her, something she has gained by being loyal to her friends, even when they fall out with each other. She loves her job, working in a busy London store, dealing with customers all the time, including difficult ones.
It hasn't been an easy journey for her and she still has her moments, and at times drives me nuts. But she has met her challenges head on and dealt with them.
You are of course not my daughter, but your own person. You will have your own successes and failures and I am confident you will find your own solutions moving forward in life.
As for your parents, they may not always know what to do, or how to help/support you. But from what you say they love you dearly and are proud of you. As parents we make mistakes and don't always understand. Like my daughter I hope despite all our faults as parents and the occassional upsets your parents will always be there for you when you need them.
Mimlysanda over 8 years ago

Thank you :)
Former Member over 8 years ago

Firstly, welcome to the forum. This has been a massive help for me over the last three years since I got diagnosed (at the age of 56!) Diagnosis does take some getting used to but I have found that my life has just got a lot better since then. I found a really useful book ( www.amazon.co.uk/.../1606236342 ) before I got diagnosed and I think it is a good place for newly diagnosed people to start.
The forum has a range of members, some have more problems than others but I would hope that you will learn a lot and not be put off by some of the things that you will read here. Autistic people are not the most socially skilled sometimes so please make allowances before diving into an argument with someone who may have more issues than you.