My Autistic Self – bridging the gap from diagnosis onwards

Being diagnosed as autistic at any stage of life, especially later, can be overwhelming as it can be difficult to fully understand your diagnosis.

We know there are around 490 people currently waiting for an autism diagnosis and an unknown number, possibly 200-300, waiting for support post-diagnosis in Milton Keynes and the surrounding regions of Bedford and Luton. It is no secret that there is a significant need for support provision for these individuals and, due to the incredible stress our social care system is currently under, a limited opportunity for this to be provided.

We know from the experiences of our own members about the barriers they have faced in obtaining an initial diagnosis and being pushed to the brink, believing no-one cared about the struggles they were facing. Receiving a diagnosis can leave the individual with complex feelings. Relief at finally having an answer, but also fear of the implications this may have going forward. Many people who are diagnosed later in life are left feeling frustrated that this wasn’t picked up earlier and anxious about how they will deal with this going forward.

It is clear that there is a lack of support following diagnosis and this leaves people feeling overwhelmed, detrimentally affecting their mental health and needing support and help. And this currently isn’t available, as the pressures on the NHS are immense.

Last year, we ran a trial of My Autistic Self sessions. These provided a space for adults in Milton Keynes where they could find support and help after receiving an autism diagnosis. These sessions had a positive effect on those that attended. Not only did they meet people going through a similar experience, but they also found the confidence they needed to face their future.

What did our attendees think about the sessions?

“I feel respected, listened to and that I’m not alone. I have made some friends and I am able to talk about the things I really enjoy. There have been times when I’ve laughed out loud and I haven’t done that in ages.” 

“Even though I couldn’t attend every session, I felt supported and I found that all the things I often struggled with are things that can be supported. Thank you.” 

“I’ve got better at talking to my dad about my autism and sharing things about me with him. I don’t feel so lonely now and the friends I have made has been good.” 

“I’ve learnt a lot about my autism and that I am not alone in some of my characters. This group has given me the chance to talk about my autism and got me out of the house. I have support when I needed it and made a few friends too.”  

“Expect the unexpected… you will learn and be able to compare coping strategies.”

A successful bid

We are delighted that following the success of this project, we have won a bid put to Bedfordshire, Luton and Milton Keynes Integrated Care System to provide our eight-session My Autistic Self course, 10 times throughout the year. This will provide support for sixty individuals in total, enabling six weekly in-person group sessions per course, followed by two follow up sessions at monthly intervals.

The sessions will provide an opportunity for individuals to share their feelings and explore their emotions relating to their diagnosis and their experience prior to this. Meeting people in a similar situation can help them to learn from each other, through sharing their experiences, ideas and coping mechanisms. This can help them to feel less isolated and improve their self-esteem. We will help them to identify their strengths,  weaknesses and form goals for themselves. We will also help them to learn about communication; and explore how and why they might struggle in social situations and how to navigate and improve on this.

Our My Autistic Self sessions will help bridge the gap and provide a true pathway of support from diagnosis onwards. The sessions will run in Milton Keynes at Cornerstone Community Church. Individuals can be referred via NHS Mental Health service or may self-refer.

If you are interested in this group, please contact Sue or Simon at Talkback by using the email address or call 01494 434448.