A community member talks about her life and autism

Me my life and autism

How many times have you looked at someone and judged them by appearance? I've heard them all stupid, fat, ugly, lazy, skinny, lanky, and strange.

Hi, I'm a mum of 2. I live with my youngest son, who, at two years old, was diagnosed with autism, and it changed my life completely.

My childhood

As a child, life was interesting, looking back now. I was messy, struggling with sensory difficulties; I struggled to communicate feelings, which hasn't changed in my life and hasn't helped because the adults in my life through my childhood were not the healthiest of people to be around. I've had spiteful name calling, amongst things thrown at me for being well different. And oh yes, I moved a lot as a child. I won't go into much detail because this is probably as much as I can cope with writing down.

Education

The teachers struggled to teach me, and I was kept at lunchtime to do handwriting lessons because I couldn't use a fountain pen without making a mess. I wanted to learn but could never concentrate, and nobody would sit down and show me how to do it properly. I loved maths because it was stable, and no matter what school I went to, the answers were always the same. I hated English because I had no imagination and struggled with the basics, especially colours and full stops. So this will probably have missed loads out, and when it came to stories, I used life experience to add details.

Unfortunately, the children around me were the same. (except for a few who accepted me for being myself.)

And then

I eventually put myself inn a foster home; however, I know I didn't fit in there really either. I was always the loyal oddball who everyone would boss about and pick fault with. Yes, I did do some naughty things, but only once or twice.

My life as an adult early years

Eventually, I just got so used to not being quite there and not fitting in properly that I found I mimicked people you shouldn't but kind of do. I'm definitely just accepting any bone I'm given from anybody. All I wanted was to be accepted for being me.

After I reached 23, I was diagnosed with depression and anxiety and given counselling. The counsellors didn't know what to do with me, and I felt useless at the end of the sessions.

And then

Then, after I got married, I got pregnant for 1st time. I broke down (this mind was ten years before I got diagnosed). Every sense was doing overtime. My mind was scared for me and my child, and though I was married, I was doing it alone and felt it. My husband and me went to give birth but he wasn't exactly supportive, and I did end up with depression while pregnant. Thankfully, I don't remember much, except it wasn't easy; however, seeing my 1st born for 1st time is one thing I remember as my favourite feeling. To him, my sensory issues didn't matter, so I did start to peel off my armour just for him.

Eventually, I had my second child, and even though I asked for reassurances, I didn't exactly have any. I yet again struggled to be heard through my labour, and the pain was horrendous. I was told I couldn't possibly be going through such pain until someone put me on a monitor and I was offered some pain relief. I now realise this was because I'm highly sensitive to some pain. Other difficulties came, which were challenging to put into words; then, my beautiful boy was born.

Diagnosis

I suffered from a lot of difficulties with bonding with my youngest son, which progressed into post-natal depression. So I had therapy, etc, to help bonding.

Then it was suggested my youngest son, at 2, had autism. My life changed again from then on.

I fought for my sons and started to notice how many things were similar to me. I went to a doctor and asked to be referred to a specialist but was told it would cost a lot of money. I also asked a specialist working with one of my sons to help. I was fobbed off. I was lucky because I did find someone to fight my corner from an autism group for children and eventually got a diagnosis at 40.

After my diagnosis

My life changed again. I started to understand myself. I stood up to my then-husband because I knew my situation was toxic. My boys are now adults. Until now even though I've been diagnosed for 11 years, I'm finally talking about myself and how I feel about my autistic traits. The one thing I find is how lonely it has been and how heavy my armour still is. I want to be seen for me, but I'm so scared of too much attention. I'm also such a big fan of autism acceptance and the right to be our natural autistic selves without judgement. In my experience, autism diagnosis is important as early as possible. Helping people has helped me along, too; what I still find difficult is knowing when I'm being a help, a hindrance or being used. Even now, I find this the hardest.

And now.

I've met some lovely people on my journey a lot who I met this year. They have helped accept me for me and my family too, and slowly, this year, thanks to a few wonderful friends who share my struggles, my armour is starting to fade. Hopefully, one day, I can help people without judging my experiences.