My story:

Growing up, I rarely met anyone that was autistic (or at the time did not realise was autistic). When I did meet an autistic person it was generally a male, wearing ear defenders, making loud and unexpected noises, not making eye contact and pacing back and forth. Your "typical" autism presentation from 20 - 30 years ago. In my early 30's I'd had enough of working in the sports sector and wanted to make the transition to the charity sector. One of my job interviews was with the National Autistic Society - I spent hours and hours researching not only the society, but what autism was, how it could present, how it was diagnosed, the different challenges and unique talents it can bring. Although I didn't get the job, my fascination with autism remained.

My lovely husband of 11 years and I have 2 girls aged 10 and 8, both diagnosed as autistic. I suspect they may have inherited the gene from me and now both girls say it's my turn to get a diagnosis! I will when I find the time. Here is a brief (believe me I could have gone on and on) synopsis of what autism means to me now:

- Learning that autism can present extremely differently in girls. Yes we have the hand flapping, the violent meltdowns, the jumping up and down, the ear defenders and the fidget toys. We have the agonising and tears over not understanding what peers mean or are talking about due to very specific personal interests and they hours spent learning social cues to be able to fit in a little better. We also have the subtle traits, that unless you are really looking, you wouldn't even notice - hair twirling, finger fidgeting, intense eye contact, wiggling in seats so much that people ask if they need the toilet, the inappropriate or funny responses in conversations or from questions, the pack lunches every day (as school dinners are way to much of a sensory overload). I could go on, there's many more!

- That girls tend to mask. A lot. Masking is a strategy used by some autistic people, consciously or unconsciously, to appear non-autistic in order to blend in and be more accepted in society. Bess has been described by one specialist as the biggest masker she has seen. Great, you might think, she's learnt to fit in and get on with it, she's fine! No, no, NO!!! Masking is exhausting mentally, emotionally and physically. Despite being in a mainstream setting that made every possible adjustment for her, is incredibly supportive and kind, sought the input of education specialists and therapists and encouraged her to drop the mask, she couldn't. Bess is currently in autistic burnout. At its worst she wasn't sleeping, eating, talking, playing or leaving my side. Four months later and she is able to walk her sister to school each morning, she's able to communicate (sometimes only via visual aids and signing or writing), she can play in her room alone without me by her side, she is able to cope with me leaving her with Rick at home for a maximum of 18 minutes whilst I go for a walk around the block. This alone time is always timed. She still isn't able to tolerate anyone coming to our house, to go in the car for more than 5 minutes, to eat in a public place, to go on days out, to go to school, to go to the local park. I could go on. Suffice to say I'm on leave from my 8 hours a week job at her school which I absolutely love with all my heart and miss so much.

- It means being told (directly and indirectly) by education settings (all the way back to nursery), by activity providers and by some humans in general that you're a neurotic parent, that your child is fine once you have gone, that there's no way the child is autistic as they are social, make eye contact, don't line toy cars up in a line, are meeting or exceeding expectations in physical and intellectual milestones, they speak beautifully, they have loads of friends. Etc, etc, etc. Basically its meant feeling like an absolute failure as a parent (despite the parenting courses you get sent on and pass with flying colours).

- It means planning everything with military precision so no one is triggered, everyone is regulated and if there is a minor change (or a major one - they both have the same outcome) then we are prepared. It means packing a bag of fidgets, ear defenders, sunglasses, water, safe snacks, comfort items, a spare bag to put the stones, sticks or feathers that are collected in, spare clothes. It means having a clear plan, a clear route to the plan, a promise of sticking very rigidly to the plan. This is for a 20 minute round trip to Coop for a pint of milk. Can you imagine what goes into trying to go to the park for a couple of hours, or for a half day at a farm, or a day out at a zoo? Don't even talk to me about a 4 night holiday... (or which we had to leave one after just 10 hours and lost all the money we paid). I used to love spontaneity, but I have had to give that up for now.

- It means no social life, it means a very very limited time with your spouse, it means long periods of mental, emotional, physical fatigue, it means stares and judgements at your children's behaviours, it means invitations to socialise with other families become less and less each year, it means that if you do get invited somewhere having to ask the most ridiculous questions (will there be balloons, how many toilets do you have, what food will be on offer, is there a space we can go if it all gets too much, do you mind if we leave after half hour, how many people and can i have a list of names of who else will be there etc etc etc), it means losing hundreds of pounds each year on loss of income or not being able to attend the days out or holidays you pay for in advance (because autistic anxiety doesn't count as an illness on cancellation policies). It means hours and hours filling in forms, attending appointments, fighting to be heard and believed.

- It means a unique, wonderful close knit family that can spend hours together laughing, can become incredible at finding fun things to do at home, can really appreciate the little things in life. It means incredible children that can astound you with the things they achieve, the way they show their love, the way they can comfort each other (when they aren't triggering each other into meltdowns), who constantly ask the most fascinating questions, who view the world in their own brilliant way. Who are really, really funny and quirky (Freya) or sing beautifully and can move you to tears with her delivery (Bess).

I'm doing this 60 miles in June challenge to raise awareness or autism (particularly in girls), to encourage conversations and questions and to invite openness and honesty around the condition. No question is a silly question, ask away. Oh and I'm doing this challenge on a treadmill, in my house, due to not really being able to leave the house. Its rather boring, please sponsor me!! Thank you for reading this, I didn't plan for it to be so long!!

Lastly.... PLEASE sponsor me! Thank you xx

I'm taking part in the 60 Miles in June challenge in aid of the National Autistic Society. The National Autistic Society are there to help the 700,000 autistic people in the UK and their families - be it running specialist schools, campaigning for improved rights or training companies on being more autism-friendly, they are dedicated to transforming lives and changing attitudes. Your donations towards my efforts are greatly appreciated and not only that, but they will also be a huge help in creating a society that works for all autistic people and their families, thank you! 💜