My autism, ups and downs


I was diagnosed with autism at the age of three. I was unable to talk and fixed in my routines. I had no desire to be part of this world. I did not utter my first word till I was five years of age and even then I only repeated lines from TV shows. I was encouraged to use symbols and sign language to make myself understood. By the age of eight I was talking in simple sentences and progressing well.

I survived the education system with a full statement of educational needs. In my teenage years I was even able to make friends and had a bit of a social life at various sports clubs.

At the age of 20 I moved in with a very good friend, Dave, who became my carer as well as my best friend. I was a very isolated person and spent all my time in the house obsessing over DVDs and computer games. I had no interest in social activities and was happy to be left alone. Dave encouraged me to become part of the community and join in with things he was doing. Slowly I became more social. But I still preferred the company of Dave and staying in my own home. To some extent I had become scared to leave.

I was diagnosed with OCD and social anxiety when I was 22. I had become so fixed in my routines that I was petrified of any change or anything new. I would hardly leave the house even with the support of Dave and I spent most of my time in silence organising my collections and DVDs.

One year later I was given a new social worker from the Learning Disability team who was amazing and really wanted to help me. She could see that I needed a life beyond Dave and my home.

I was referred to a super Psychologist who I have been seeing for four years now. She works through my anxieties with me and helps me understand the world better. She has also tested my IQ and memory so we know exactly what areas I have problems in but also what my strengths are and how to use these to help me in other areas.

I was also referred to an Occupational Therapist who worked with me for three years on the many sensory problems I have and also issues involving safety in my own home and out in public. I lack a realistic sense of danger so we needed to work for quite some time of how to keep me safe.

While all this was going on my social worker was looking into education and activities for me. We tried adult education course that went well but were only short courses. We also tried several day centres none of which could meet my needs. They were a safe environment for me but I was not stimulated enough, I got very bored and this resulted in me either wandering off or lashing out.

After much searching I was offered Direct Payments to either employ a PA or an independent service. I found a wonderful day service which I now attend three to four days a week. They offer therapeutic art, daily living skills and also cookery. This is ideal for me. The activities provide me with constant stimulation in a safe environment with a high staff to service user ratio. The staff have a good understanding of Autism. They also hold regular leisure evenings which I also attend. We have been to the cinema, bingo, bowling, pub, out for meals, shopping and much more. They allow us to be adults and experience normal adult activities with the support, encouragement and safety we need.

I was in an ideal situation. But it suddenly all changed.

At age 27 I was suddenly thrown out of my routine when for various reasons Dave was unable to continue to be my carer and live with me.

It happened very suddenly and my whole world crashed! Social services crisis team were brought in and began visiting me three times a day, everyone was fussing around me and I didn’t know where I was going to end up. Would I be allowed to live on my own? Would I have to go in to a home? What would happen to my dog? Who would manage my money, do my shopping, take me to medical appointments? I lost over a stone in weight in 11 days as I could not eat, I could not talk. I simply just fell apart.

My day service stepped in and got me back in to the swing of things. They offered me increased emotional and practical support. My Direct Payments were increased and in the next few weeks I have a new PA starting.

All the professionals involved in my care had meetings and more meetings. It was decided with support I could live on my own and keep my dog.

I have been living on my own now for eight weeks and two days. I am doing ok. I am cooking basic meals using a microwave only. Sometimes they don’t go right and I don’t eat but most of the time it turns out ok. I have been keeping my house clean and tidy with the help of prompt sheets, visual time tables and a bit of practical support from support workers who visit me two days a week. I hope I can continue to live on my own with this high level of support.

My day services are going very well and I am so glad I found such a unique and amazing service to be part of.

Looking back through my life I can see my autism has caused a lot of problems and the lack of understanding I have experienced is amazing even with so called professionals! It has often seemed like a dead end and I have wanted to give up and just hide in my own little world. But I am glad people pushed me to try new things however hard it was because I now have a good life with adequate support and am achieving a lot. I even have hobbies! I am a member of a website that supports parents and carers of children with autism and I help run their live chat room as well as writing the monthly newsletter. I have been a member for over three years and hope I have helped them out as much as they have helped me.

If I could give only one piece of advise to someone entering adulthood with Autism it would be to keep fighting for what you want, you are a person too and you are entitled to a good, happy and safe life.

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