Is the Autistic-led nature of the Pathway programme important to you?

“More connection and u feel completely understood – you also know they are not going to try and make you more neurotypical but more yourself”

“They understood everything that we were struggling with and so they were able to help in the correct way”

“This provided additional information that you would not normally get from people who do not have lived experience”

“Very important. Building a trust and relationship with others is difficult, often I find people do not understand me this was not the case with my mentor.”

“SO IMPORTANT! The programme content has been so great, and it really feels like an amazing space because (a) everyone understands (and I’d gone my whole life thinking no one could understand me), (b) I was *so* inspired, right from the start, by Marie & Co for setting it all up (seeing what amazing autistic individuals on a forum can do working together dispelled any feelings I was useless or broken or ineffective – we can be powerful), but ALSO by the other people in the group – I identified with them, saw how they were ND and really liked them for it (I could NEVER like myself before I knew I was ND) – just the first information session was a great start for a positive autistic ID! NDSA has made such an amazing difference to my life in such a short time. I really mean it. The discussions are so good too – there’s a real hive kind thing going on. People saying things you thought were only ever in your head.”

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“It is extremely important. We know ourselves best and can provide the best learning environment for our needs. We have the understanding that is necessary to put together a programme such as this. It would not have been the same if it was devised by a neurotypical person, that would have been like them looking in from the outside and trying to work out what they thought we needed.”

“Crucial. It takes an autistic person to understand another autistic person best.”

“It is very important that people who understand our struggles and how we communicate lead programs like this in order for more autistic people to thrive.”

“In short, let me give an analogy. Just as it’s bizarre to take advice and opinions regarding woman’s health from a man, it’s bizarre to take advice on autism from someone who has never experienced the world the way I do – so VERY important”

“It made me feel less alone and not talked down to or uncomfortable.”

“Essential. I was not feeling very good at all about my diagnosis prior to starting programme, I felt let down by the health service and very disappointed at being offered no support post diagnosis. I have worked alongside mental health services in my previous job and have had call to access them myself and do not trust them to be anything other than lip service. Even amongst my own family I was having issues with what I saw as one sided discussions about the “difficulties” my autism presents to everyone else, so I felt very isolated. I have experience of doing peer group recovery groups in the past and found that sort of support hugely helpful and the only thing that has enabled me to make positive changes in may life. I had met a group of neurodivergent  people with positive self images just prior to applying for course and the fact that it was designed, produced and delivered by autistic people was the big selling point, the thing that allowed me to have the confidence to trust enough to apply. I’ve discovered that I can’t be myself in any hierarchecal situation where someone is labelled an authority figure, despite their knowledge being purely theoretical.”

“It’s vitally important as you know there is a complete understanding of the condition from those running the course. There is such a lack of understanding with neurotypical people, even the so called experts.”

“Being led by autistic people is an important part of the programme for me as it offered a sense of validation of my own experiences.”

“It is vital that a programme such as this is led by the people it seeks to support. By autistic people, for autistic people.  This avoids the pathologising language prevalent in non-autistic discourse. It also meant that the diversity of autistic people was emphasised, alongside the strengths we may have. Having an autistic mentor meant that my experiences felt validated- able to empathise with each other’s experiences, ways of thinking, and for my mentor to explore possible strategies with my way of doing things in mind.”

“It was wonderful to feel surrounded by other autistic people and to know that the programme was designed and delivered by autistic people”

“Very important, as it is not helpful to be led in these things by those who have no understanding of what it is actually like to live as an autistic adult in today’s world.”

What has been the best/biggest learning point for you?

“Learning how to pace and set up my own accommodations”

“How to cope with sensory stuff and set boundaries and stick to them”

“Being able to discuss with people who have been through the same as me, being able to not feel like i am alone.”

“Learning to set achievable/manageable goals and targets. Self-preservation is important.”

“That I am accepted as I am, and others also feel the impostor syndrome that I feel. I can be myself, my authentic autistic self and be understood and accepted. This has led to me having greater self-acceptance.”

“Monique Crane upturning the déficit model. And just in general all the little things she throws into her talks! Had me laughing, nodding, reflecting on my life! So inspired now to go back (I’m on long term sick right now) and find myself a job that I enjoy and am good at. Damian Milton – I wish my brain worked better (long covid brain fog) so I could go away and read everything around his talks. I will do when I’m better. Autism as culture. Minority stress.”

“That I am welcome in autistic spaces and more people are like me than I thought.”

“How my body functions Normalizing being autistic Self-awareness, acceptance and esteem”

“Learning how my autism isn’t entirely negative or something to be ashamed of. That I have good parts too and I am allowed to vocalise my needs.”

“That I have struggled my whole life with my executive function, specifically the ability to set goals and break those goals down into manageable chunks then to action them, and not only that but that working alongside other autistic people I can learn to work with this difference. That pausing to plan has been an essential missing component for me. That I work well with the accountability of checking in with another person when setting goals, an that this is not so much from any fear of disapproval or disappointment (helped by the fact it is a peer mentor and not an “expert”) as much as me wanting to have a positive story to tell for my own well being and to help me clarify ideas out loud. I took a lot from the idea, I think it may have been in how to tidy your house session but it may have been just before that, that I had learned to do many thing in an “anxiety response” type way to keep other people happy and that perhaps I needed to go back and re learn how to do things in a way that suits me.   Also just learning to think in terms of the dual empathy problem when trying to resolve communication problems.”

“Talking with my mentor helped to give me the confidence to go for it and I am really enjoying myself.   I have learned a lot more about the condition to which has been a huge help learning to live with autism.”

“How diverse the condition can be was a very important learning point, and now knowing that autism can be different for us all.”

“Acknowledging that I need to manage my energy, not just take on all of the things because I feel it is what others expect of me.”

“Being able to get my head around my diagnosis more and accepting it That I can feel less alone when I’m ‘with’ other neurodivergent people There are some coping skills I can put in place to try to help, particularly with exec dysfunction  That my complete mess at home isn’t unusual! And that it’s ok and not a sign of me being lazy etc That I can try to think about my needs and how I might be able to express them to others (this is a big work in progress) That I mask SO much and I need to find my own ND ways to relax, that can look different to NT ways”

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