Saturday, March 16, 2019

Age 33 currently residing in Southampton
​(moved a lot so do not feel like I am from anywhere)

My biggest accomplishments thus far are
• working in a school despite harrowing experiences during own schooling.
• completing a Go Ape adventure even though scared of heights and suffer frequent dizzy spells
• being married for 8 years (in relationship for over 12) and learning how to work and live together and talk through issues together.

Somethings I wish those who are not autistic should know about autism
• that we will always be autistic but that we are still intelligent even when there is something we find difficult.
• That it is really annoying to be told things we already know (Like ‘the old display needs to come down before the new one can go up’. I was seriously told this!)
• That I am not the same as the other person they know who has autism
• That we all process things differently and appreciate it when you just ask what we like/need.

I want to tell other autistics that
• Keep giving yourself opportunities to try new things and be brave.
• find a buddy who you trust and do things together
• don’t beat yourself up if you struggle to do certain things; stop saying things to yourself like ‘I should’ or ‘I must’ and say instead ‘I could’ and ‘I will try’
• Find your music/song and move/dance to it whenever you feel like you just want to be free (or to block out horrid noisy fireworks that go on for far too long!)
If you are newly diagnosed & can’t answer some of these or just don’t want to answer these questions or want to add more to your story, other topics I have participants discuss is their story in regards to being diagnosed.

Signs that showed I was autistic
• I just did a questionnaire on facebook (shared by a friend who also has autism) and then began reading more about autism when I scored high.
• I always felt like I was a bit different and never really fit in anywhere but when I researched further I found out about sensory things, organisational things, social things, food things etc, which all resonated strongly with me, my experiences and my way of thinking about and processing things.
• I do not think anyone else thought I had Autism but a couple of friends said that it did explain a few things! J

How I felt when I was first diagnosed
• It took a couple of years of research before I was confident enough to talk to someone close to me and then a few doctor appointments before I was referred but the wait after that was not too long.
• When she (the psychologist) said ‘I believe you are on the spectrum’ it was a huge relief. To finally be able to say ‘this is why I am the way I am’ and to have someone who recognised and acknowledged my differences as autism and not just ‘weirdness’, ‘fussiness’ or ‘shyness’ as others had in the past was such a huge deal that I simply sat and cried. I had no idea what to say.
• It felt like I had waited my whole life to hear it, even though I had only relatively recently understood it about myself.

Today I feel about my diagnosis’
• At the time I thought ‘great, now everything will change as people will understand’.
• Now I feel like it was just the start of another journey; I am still figuring out what it means to have a diagnosis, what help I may be able to get (or not as they case seems to be), along with the realisation that I have not changed and neither has anyone else.
• Many things are still just as hard.
• People still don’t really understand me.
• But having the diagnosis means I feel justified in asking for support, whereas before I was wary of asking for help with constant thoughts of ‘I am an adult; I should be able to do this’

Resources that helped me:
• my husband is my greatest resource he accompanies me to appointments, speaks to people on my behalf, explains things people do and their motivations, helps me do things when I cannot manage, encourages me to try new things and new foods, and does not judge me in any way.
• He says ‘you are you, and I love you just the way you are.’
• Some of the staff in my workplace are really supportive and understanding and let me know things in advance, allow time outs, give me notes so I do not have to remember too many things and explain how certain events might happen.

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