Volunteer SHE RECOVERS Dance Facilitator, Together Online Gathering Host and Guardian, and community member, Stephanie Jones, writes about her experience moving from the Rainbow Nation of South Africa to England, pursuing recovery from complex post-traumatic stress disorder, and being diagnosed with autism.

Since her diagnosis, Stephanie from the future (she’s on Greenwich Mean Time) has embraced multiple healing modalities that work with her neurodivergence, not against it. And, she is now even looking into becoming a peer support worker to help folks in the autism community heal.

A landscape garden designer for the last fourteen years, with her own company, and mama to a tiny poodle named Nala, you can find Stephanie in SHE RECOVERS spaces being unapologetically herself.

I found SHE RECOVERS at a really difficult time in my life.

On 13th December 2013, I moved to the UK from South Africa. I was all excited for my new adventure to begin, but nothing prepares you when you leave your home country for another one, even though my parents were born and brought up in the UK.

My biggest adjustment was adapting to this new environment, including the culture and language. The language is very different from what I was used to in South Africa. Even though I speak English and it’s my first language, I can definitely say that English is not the same all over the world. South African English blends British English with local languages like Afrikaans, Zulu, and Xhosa. For example, in England, a robot is called a traffic light. A braai is called a barbecue. Biltong is called beef jerky. Highways are called freeways or motorways. A bakkie is called a pick-up truck, and takkies are trainers. There are a few examples, but it clearly shows every country has its own version of English. Now, I don’t swear, so I really didn’t think one could go wrong.

At the time, I was also experiencing post-traumatic stress disorder (PTSD) symptoms from previous events that happened in South Africa. I was attending cognitive behavioral therapy (CBT), and nothing seemed to be helping me; it was actually making me feel worse. I was losing hope and missing connection. I felt so alone, and really felt like it was never going to get better. I was really missing home—my best friend kept reminding me to keep going and not to change who I was.

So, I dug deep and kept going.

While attending CBT in 2017, my therapist suspected that I could have autism and wanted to investigate it, as I was not coping with the type of therapy we were doing. I had done two rounds of CBT, which did not help, and then it was suggested I try eye movement desensitization and reprocessing (EMDR), which is apparently very helpful with people who are neurodiverse.

What does your recovery journey look like? Where does autism live in that journey?

Recovery to me looks like the wildest roller coaster that one is still riding. There have certainly been a lot of highs and so many lows. I started my whole recovery journey in 2017 when previous life experiences started to affect me daily and especially at night. I never thought the past would come back in such a brutal way, but it did, and one needed to address it as it was starting to take over my life.

While I was doing CBT, my therapist suspected I had autism and wanted to investigate it. I attended online EMDR therapy while I was waiting for the autism assessment. I also attended equine therapy sessions, which I found really helpful—the psychiatrist was aware that I was waiting for an autism assessment. It was a lengthy process as there were so many forms that needed to be filled out; eventually, I was assessed in 2021 due to COVID19 and the waiting lists. I attended the autism diagnosis appointment online and was assessed by five people. It was a long day, but by the end of it, I was told that I have a diagnosis of autism and they would invite me to a post-diagnostic course where they would explain it in more detail.

In the meantime, I was assigned to an autism bridge builder (a professional mentor who facilitates connections between autistic individuals and communities and services) who would help me understand my diagnosis and aid me in moving forward in my life. I attended two months of sessions along with other newly diagnosed people, and it was then that I started to really understand myself and be seen by others just like me. I was also assigned to an occupational therapist who helped me with my sensory profile and understanding some of my challenges.

Getting this diagnosis really helped me realise that it was not me impeding my healing, it was that it was the wrong kind of therapy for me, and it was impacted by my autism. There was nothing wrong with me; I was not stupid. The reason I struggle with things in life is that I see and experience this world differently from others, and that is perfectly okay.

It has taken me a long time to get to this point, and I could not have done it without my autism bridge builder and the SHE RECOVERS Community. I was finally moving forward in life, even though I was making small steps.

A year later, I was assessed for ADHD by the same organization that assessed me for autism. Unfortunately, the person who accessed me did not take my lived experience into account, and instead, they took other people’s perceptions/versions over mine. By the end of this assessment, I was told I did not have ADHD or autism. My autism diagnosis was taken away. To say my whole world was turned upside down is an understatement.

My light started to dim again, and I was really losing hope. I could not think straight. Still to this day, I have no idea how this could have happened. Even my autism bridge builder was completely baffled and said that if I were not autistic, she would need to question her whole working life and degree. Fortunately, my autism bridge builder continued to work with me as I was really struggling with what was going on.

During this time of confusion and struggle, I was well supported by SHE RECOVERS. It was my aunt and this community that really helped me stay on track and stay true to myself. Six months later, I spoke to my autism bridge builder and said, “I think I need to go for a second opinion.” My autism bridge builder was so pleased to hear that and said, “I have been waiting for you to say this!” They couldn’t suggest this before, as it could be seen as influencing a person.

In November 2022, I went for a second opinion and made sure the new people were aware of my situation. The second assessment was more intense than the previous one, as they knew what I had been through. It was done over multiple in-person sessions. I was assessed by four people and was again diagnosed as autistic.

I really felt like a yo-yo during this time of my life.

Fast forward to 2023, getting my diagnosis helped me get into the right recovery center, as I clearly needed therapy that could be tailored to me. I had been struggling for so long, and it had taken me a long time to trust people again and open up. I have been through so many mental health services and am currently still getting help at that centre today.

I am so pleased to say that I am finally starting to get the right help for my CPTSD. I currently help my care coordinator facilitate a mindfulness art group every Friday, which I absolutely love. I still have my autism bridge builder in my life, and I am so grateful because I am now also studying to become a peer support worker for autistic people!

How did receiving an autism diagnosis reframe your recovery story?

It completely changed my life as I got an understanding of why I wasn’t getting better or coping with life. I had to learn that I process information differently, and that is not because I am slow or stupid, but it is because I am autistic. I also learnt that I am not an alien or oddball, I am actually a limited edition. LOL

Where have recovery spaces felt supportive of your neurodivergence?

Finding SHE RECOVERS was huge to me, and I have never known a supportive recovery community. Being able to attend gatherings and just being accepted for who I am and not being judged is incredible. SHE RECOVERS is so supportive, and I love the fact that you can just turn up as you are, whether you are happy, sad, angry, crying, or whatever, all is welcome, and you are well supported in the squares.

Being able to be 100% me and not feeling judged is a game-changer. Hearing other people’s stories helps me see that I am not alone, and I can most certainly learn from others, too.

What does self-care or self-love look like for you now?

Hmmmm, I am still learning about self-care and how to look after myself. What I can truly say is that turning up to SHE RECOVERS Online Gatherings is super helpful. Listening to music and playing with art is great fun and healing. Most of all, getting out into nature is really nourishing for my soul, not that the frogs, bees, lizards, birds, or other creatures would agree, as we have super long conversations. LOL

Where have you had to advocate for yourself—and what did that take?

Crumbs, where does one even start to answer this? It has taken me a long time to even stand up and try to advocate for myself, and to be really honest, I think I only started doing this when I came across SHE RECOVERS and my autism bridge builder. It has certainly taken a lot of tears, courage, music listening, and believing in myself to get to this point.

Now, I am even looking at becoming a peer support worker within the autistic community, as I would hate anybody to have to experience what I have.

What do you wish people knew about the overlap between autism and your recovery experience?

I wish that people who are autistic and are struggling with therapy knew that there is hope and that there are options available to them, and that they can tailor therapy to their needs. It is a really difficult journey, but it’s important to never give up. Stay true to yourself and know that things can get better.

How does your sensory experience shape your recovery (in gatherings, movement practices, environments, etc.)?

Creating an environment that is healing for me looks like having all my safety tools with me. Let it be a fidget toy, a weighted blanket, dim lighting, and even having a cuddly teddy in my environment, all contribute to my recovery.

What does “coming home to your body” mean when your body processes the world differently?

I really do chuckle at this question because I really struggle with the phrase “coming home to your body.” I struggle with this as I am one who does not like being in my body, as I struggle to sit with my emotions. So when I hear this, I picture myself going off to a place where I feel okay, safe, and free. I generally take myself off to the land of Harry Potter, where I am with Dobby and all the magical creatures, just being free and being themselves.

How has being a SHE RECOVERS Dance Facilitator changed how you embody recovery?

I still have a hard time believing that I am a She RECOVERS Dance Facilitator, as the last thing I can do is dance. Becoming a dance facilitator has helped my recovery tremendously, especially when I was trying to find out who I was. Listening to powerful lyrics has helped boost my self-worth and relight a little fire within me. It has also helped me shift a lot of emotions, too, in a good way.

What are the ways your autistic traits have supported your recovery?

Being creative and using my sense of humour has helped me get through rough days. I know when things get really tough, I make many jokes and try to avoid having to focus on the serious things to alleviate anxiety and stress.

How has your way of thinking, feeling, or perceiving helped you stay committed to healing?

Again, using my creativity has helped me stay committed to my healing. For a long time, I felt lost, lonely, and in the dark. Once I found SHE RECOVERS and I got my autism diagnosis, that little spark was relighted within me, and as soon as I realised it was ok to be me, I started to protect that light, and I continue to do so. I am determined that no one will get close to dimming or blowing out my flame again.

What role do community and connection play in your recovery/neurodivergence?

SHE RECOVERS has impacted my recovery so much. Being able to attend online gatherings has been a huge saviour to me. Especially in the early hours of the morning when one cannot sleep.

Just being able to hop on a gathering at 01:00 in the morning and listen in on gatherings helps calm my nervous system because the voices I hear are people I call my tribe. I truly feel at home. It has helped me return to the person I have been my whole life and to lean into my strengths to get through difficult times.

SHE RECOVERS has helped me to trust people again and given me hope when I couldn’t find it. It has taught me not to abandon myself or minimize, shrink, or hide myself for other people, and to be proud of who I am.