Tony Flower writes
It takes courage to stand up and speak in front of an audience of over 100 people, particularly if the subject matter is so personal and painful.
The Think Autism Conferences are a collaborative initiative between the Central North-West London (CNWL) NHS Trust, which oversee Mental Health Services in Milton Keynes, and Talkback UK, a charity that offers support to autistic people, working with MK Council.
There, Matthew, Amy and Karen told of their remarkable journeys, from desperation as they battled for autism diagnoses, through struggles to cope and gain access to mental health services, to the hope engendered by finally gaining the right support.
Their Talkback membership and involvement with the conferences have helped to transform their lives and to look forward with optimism.
We asked them – What was life like before Talkback?
Amy – Before Talkback I was very lost. I didn’t know where to go for help or support and I didn’t know at that time that I was autistic. I never felt like I fit in anywhere, which was a constant since I first went to school. My ADHD assessment in 2020 prompted me to seek support for autism.
Matthew – Before Talkback I struggled with self-confidence, self-esteem, and my mental health. My mental health was at an all-time low. I didn’t really have any self-worth.
Karen – Before Talkback, I had no friends. My mental health was in dire straits, and I had just been made redundant from the place I’d worked for five years. I was referred to Talkback by the Job Centre, due to being (mistakenly) diagnosed with a learning disability and severe depression.
What difference has Talkback made for you?
Amy – I was formally diagnosed as autistic at the beginning of 2023. I feel validated, not crazy and I have hope. For the first time in my life, I am able to learn more about myself with confidence. I won’t lie, the path towards this doesn’t look completely clear and I’m still learning and realising new things every day. But I now have direction, a purpose and support from the correct places. This is something I’ve never had before, so It feels quite alien.
Matthew – Since being at Talkback I am more self-aware. I have been able to accept my autism, not take it as a bad thing, but to take it as something that is a PART of me. I am able to understand myself more. I know I’m not something to be fixed but I have a greater understanding of what I can accomplish.
Karen – Now I have friends, some of whom feel like siblings to me. I have formed trusting relationships with staff members at Talkback, who have taught me about positive and dangerous relationships over the years. Talkback has also given me the confidence to start learning again and to try different foods in our healthy living sessions. Such conversations have led me to make changes that have helped with my health and to challenge some of my textural sensory issues.
What opportunities have you enjoyed?
Amy – Whilst being a part of Talkback I have participated in focus groups with the Council. I have also been heavily involved in and been a speaker at the two autism conferences. My eyes have been opened to how little society actually knows about autism, how it’s perceived and how it’s different for everyone. I enjoy seeing the amount of enthusiasm people show for wanting to learn more about this, just like me. It has meant the absolute world to me to be a part of Talkback and the opportunities they have given me. I hope to become more involved in the future – to educate, share, learn and discuss autism in a practical, open-minded way with no judgement.
Matthew – The conferences have given me the biggest opportunities I’ve ever had to open up about myself and my lived experiences of autism. After the June conference, I felt on top of the world because I finally discovered my voice and I’m helping to change the way that autistic people are looked at and understood in mental health settings. I felt listened to as I had 75 mental health professionals looking at and listening to me at the conference. I felt like I mattered on that one day.
Karen – I enjoyed the Think Autism Conferences that I was involved with in 2022. It was good to interact with the CNWL staff and hopefully, my voice got heard. Working with CNWL with their sensory rooms and garden at the Campbell Centre. It was good to see some of the changes they have made on a recent visit there.
What does the future hold?
Amy – I would really like to get more involved with Talkback when I can. Also to be a part of the podcast and potential videos in the future to educate and help people understand autism. I want to be involved in the discussions surrounding this and give people my view and an idea of my experiences.
Matthew – My future aspirations with Talkback would be to tell my story to a wider audience on a podcast, to change the outlook with public on how they see and treat different-minded people, and to increase their understanding of us – people only fear what they don’t understand. I want people to see that being autistic doesn’t necessarily give you a disadvantage in life.
Karen – I would like Talkback to provide more opportunities to educate people on autism and learning disabilities, and opportunities to reach out to more autistic people. I want to educate anyone and everyone who is interested because everyone has someone in their life who is autistic, knowingly, or not. However, I mostly want to target healthcare and the education sector, as they are most likely to see an autistic person when they are at their most vulnerable. It is at our most vulnerable when we can be built up or torn down.
And to sum up?
Amy – Without Talkback, I’m pretty sure that I would still be completely lost. Not having any idea of who I am. I would still be asking myself: ‘What’s wrong with me? Why can’t I do things others can do? Why am I not capable of looking after myself? Why do I not think like everyone else?’ When you ask yourself these questions every day you end up feeling useless, worthless and stupid. Sometimes even crazy.
Now I know about my autism, I have a reason to ask myself these questions. Not just because my whole life is falling apart and I don’t know where I’m going wrong, but because I’m literally learning how my brain works and how my perception of the world is different from neurotypical people. Not too dissimilar to a toddler learning to walk, talk and count.
It is because of Talkback that I’ve been able to come to these conclusions and I don’t know where I’d be without them. I’ve learnt a lot and I hope I can continue learning so that my experiences and perception can help others in the future.
Matthew – As a result of my work with Talkback, and being given the opportunity to speak at a conference over the summer, I decided to not give up job searching. I’m pleased to say I have secured a job that I enjoy at the moment. Having a job has given me purpose. I can now contribute to the bills, rather than relying on my fiancée. It has given me hope that employers can change their perception of autistic people. Since joining Talkback in 2020, I have come out of my shell and don’t hide the real Matthew so much.
Karen – Talkback has become a lifeline for many over the years; from making new friends, support through difficult times, learning new things and taking part in new opportunities. All team members don’t just know autism, but also make it their purpose to understand and support the person. I have no clue (yet!) where Talkback will go in 2023, but I know it will be extraordinary!