Lindsay's story

It’s 1.42 am, Sunday the 2^nd of April and I can’t sleep. It probably isn’t a great situation for a single parent carer with many responsibilities but unfortunately, this isn’t an unusual occurrence for me and happens more than I’d like to admit. Tonight, as always, I’m awake because the billion thoughts in my head won’t let me sleep until I’ve thought of every little detail of what the day ahead could bring.

For most, it will just be a regular Sunday, doing normal everyday things that people wouldn’t think twice about, like going for a food shop, travelling on a bus or even going for brunch with friends. But for a large community of people, those everyday things aren’t as simple and this Sunday is significant to them. It brings a special recognition, awareness and an open-hearted appeal for acceptance and understanding. April 2^nd is World Autism Awareness/Acceptance Day and the beginning of World Autism Acceptance month.

The autism community opened their arms to me nearly ten years ago. My son’s diagnosis was new uncharted territory and such a shock to the system, that at the time, I thought I had failed him as a mum. It was one of the hardest times in my life, but we were fortunate to be one of the few who were guided to our local carers centre,  and to an angel, otherwise known as our carers support worker. She held my hand, let me cry, dried my tears and then introduced me to our new community and the people who would become our dearest friends, our village.

Through this village, we’ve found supports in unexpected places like a junior rugby team, an autism specialist consultant and a charity called One Parent Families Scotland. Our supporters have held our hands through every trial and tribulation, supported us in our many battles, listened to us when we needed to be heard, educated us on everything we need to know, but above all else, they unequivocally accepted us for exactly who we are.

It’s through these years of education, love, acceptance and support that I am taking on a new battle – I am going forward with an autism diagnosis for myself. Even just admitting that is still so overwhelming but something I feel I must do. I’ve known for a few years that I am most likely autistic, especially considering every professional we’ve ever met supporting my son has commented: “you realise you’re autistic too, right?”.

Most of the time I took this with a pinch of salt and got back to focusing on my son’s needs. It wasn’t until I was sat with my parents watching the BBC ‘Paddy and Christine McGuinness: Our Family and Autism’ documentary that the realisation truly hit home. Listening to Christine McGuinness speak after she had been diagnosed broke me. Hearing that she felt she had always been the problem, that she was a nuisance or a hindrance to everyone all the time, even when she didn’t mean or want to be, cut me to the bone.

It felt like she was telling the world my deepest, darkest secret.

I had always felt like I didn’t quite fit anywhere and that there was something fundamentally wrong with me that everyone else could see while I couldn’t. I wondered why I felt more comfortable portraying a character in a play than I ever did in my own skin, why my emotions had always seemed to be too big for everyone, why my heart tended to look for the best instead of acknowledging the worst and why my life has been a constant drama or fight, even when I didn’t want it to be. My family’s nickname for me had been the “Drama Queen”, a name that I had secretly hated but felt I deserved. It turned out the answer to all these feelings, thoughts and questions was that I’m autistic and none of us had known.

For me, with all the experience I’ve had in our community, it’s now not that difficult to recognise autism in other people. It’s become a bit like a sixth sense or a gut feeling, but trying to recognise it in myself has felt alien. In picking apart my life and dissecting what I thought was “normal” and what I assumed everyone did, I am beginning to realise what is actually my autism and what is unique to me. I have started having some very open and honest conversations to discover just what those differences are.

No, most people don’t have ongoing monologues, thoughts or music running through their heads all day.

Yes, some people have an incredibly high pain tolerance but usually not to the point that their joints can dislocate and it’s only annoying to rotate and realign them.

No, people don’t generally talk to themselves to pre-plan answers to any conversations that may arise.

Yes, some people do have auditory or hearing problems, but it’s not usually that they can hear a conversation happening three tables away from them better than the one happening right in front of them.

No, it is definitely rare to have never experienced toothache, most people experience excruciating pain with it on multiple occasions.

Yes, everyone loves comfortable clothes but not usually to the extent that that comfort must be an essential for their day to proceed at all.

No, people don’t generally have a perky alter ego who they bring forward in social situations, they don’t play a part like an actor in a scene then dissect every interaction for mistakes and shoulda, woulda, coulda’s hours later.

Yes, some people are visual thinkers but usually not to the extent that recalling memories or reading books can create what feels like a movie reel in their heads.

No, most people don’t generally overthink every future single scenario that could ever happen and then have different plans or outcomes to cope with them all.

Yes, every single person in the world can be stressed or get overwhelmed, but usually not to the point that they descend into a panic attack, feel like their brain shutting down and they can’t function or breathe properly.

I’m still in the trenches of discovering more about myself, my autism and what it all means for me. Processing this has been incredibly difficult but also surprisingly freeing. It has opened the door to conversations I’d never thought I’d have with people, discovering our differences, allowing myself grace and asking the people who know, love and support me to approach me with a little patience and understanding and recognise that my differences have and will continue to create extra challenges in my life. Now that I fully accept it, I can treat myself with more kindness, try not to mask as much as I did and ask for the support as and when I need it.

It has also made me more determined to advocate for my community and their loved ones, especially for the single parents who have no one else in their corner. I’ve always said I’m one of the incredibly fortunate few, who by luck has had an amazing family and friends around them and has been guided to services, charities and people who have supported us and continue to do so.

Not everyone has been as fortunate or has the village we have. I speak for them because services and support should never be seen as a privilege, no one should ever have to feel alone, forgotten or unimportant – especially a single parent who is doing it all by themselves. Everyone deserves the right to be educated, loved, accepted, supported and heard.

That’s the whole purpose of April 2^nd and of World Autism Awareness and Acceptance month. I hope having read my story,  it will make you more open to supporting, accepting and understanding autism and the community it’s created, and to anyone who is in need of a village, please know this: I see you; I hear you; I support you and I am always here to hold your hand.