My Life With Autism

Last week was Autism Acceptance Week and Vicki from Cygnet Elms, talked about her own lived experience of autism, including what it meant to her to get a diagnosis of autism and the challenges and benefits of living with autism.

Cygnet Elms is part of the Cygnet Health Care division and is a high dependency complex care service for 10 women with learning disabilities, associated complex needs who may have behaviours that challenge.

What symptoms were you showing which led to a diagnosis of autism?
So having a special interest in rainbows and trying to find out information on rainbows, taking things literally. For example, when I was small, at school, they used to tell me ‘Take a seat’ and I used to lift the chair and not understanding abstract concepts or phrases and had limited eye contact. But I am still working on this. But before, when I got my diagnosis, I used to flap my hands, rocking and hand wringing a lot. This is what my mummy noticed and said that I used to do it a lot. Lining up toys in terms of height order, instead of playing with dolls.

Can you explain how you felt about receiving the diagnosis?
At first, I was a bit upset because I felt like I was obviously different to everybody else. And then it helped me to understand myself better and I was hoping people would understand me better now that I got the diagnosis.

Do you feel differently about yourself and has it changed how other people treat or respond to you?
It has changed, in some ways it is good but in others, not. Especially when I was younger, other children used to tell me ‘don’t play with me’ but there were specific groups to help children and adults with autism and they helped me to understand and accept me who I am.

Do you think people are understanding of autism or are there still common misconceptions?
Not really. And there are still misconceptions about autism. Eg. the Spectrum does not help. Because according to the spectrum, the high functioning comes to one side of the spectrum and low functioning to the other side of the spectrum and that it should not be like that and everybody with autism should be seen as individuals.

How does living with autism affect your daily life?
I have a very rigid routine and get very unsettled if my routine is interrupted. I have a lot of sensory needs and so even walking to a shop can be really overwhelming for me and I feel misunderstood all the time.

What changes are put in place to help you?
We are developing a sensory diet, I wear ear defenders and I have fidget toys to help with anxiety and I have medication to help also.

What are the challenges of living with autism?
People underestimate me, people don’t understand my needs. Anxiety is a big issue and not everything is accommodating to my needs.

What are the benefits to living with autism?
I see the world differently and I am very unique. Whilst I have a lot of needs in some areas, I excel in other areas and I am currently doing a PhD on the impact of theatre on the autistic community at the University of Birmingham.

What’s one thing you want to people to know about autism?
That once you have met one person with autism, you have met one person with autism that means all people with autism are different. Eg. Me and another peer here have lots of similarities but also differences.

Describe the best thing about Cygnet Elms
The best thing about Cygnet Elms is that staff actually try to understand me and are willing to learn from us. Here every staff member tries to understand and like being on a 1:1 has massively helped. Because it has given them more insight in me because now the staff know me the moment they come into my room and they can see I am low in mood. Now that I am on 1:1 staff are brilliant in saying that Vicki you are low and divert you from that. Before that, this could not be done, as they did not understand me but now they understand me better.

About Lisa Baker, Editor, Wellbeing News 4367 Articles
Editor Lisa Baker is passionate about the benefits of a holistic approach to healing. Lisa is a qualified Vibrational Therapist and has qualifications in Auricular Therapy, Massage, Kinesiology, Crystal Healing, Seichem and is a Reiki Master.