This page provides real-life accounts from real people here in the county of Northamptonshire, providing honesty and insight into the many areas of life on the autism spectrum. If you would like to share your journey, we would love to hear from you!Contact Us
En-Fold’s founder shares some of her journey to an adult diagnosis and how it has influenced her passion for making a difference.
Childhood was a place of confusion and isolation. Intense bullying and difficulty fitting in and understanding the world made life a challenging and rather miserable experience. To the onlooker, there was a slightly odd young person, but one who was achieving; after all school was for learning! Diagnosed with clinical depression by the age of 9, but no mention of why I didn’t seem to fit.
Open-ended tasks for homework would mean that literally hours would be spent producing work that would be ‘good enough’ for the perfectionist self-critic. By the time senior school came, teachers would be reminding that we were working towards our GCSEs and not writing a PhD!
Becoming involved in scouting was a great experience, and again to the untrained observer, a young person was shining and achieving. The reality was a young person obsessed with collecting the proficiency badges and working towards the highest achievement of Queen Scout Award (which was achieved). Becoming a patrol leader gave permission to organise, plan and control the activities of the group - facilitating and leading and delegating becoming a coping strategy for controlling the world that overwhelmed.
Self-esteem was wrapped up in this constant gaslighting and masking, with burn out and a full mental health breakdown leading to an extensive hospital admission at 16 years old. Sadly, deterioration in mental health is not uncommon for undiagnosed females on the autistic spectrum. Refocussing and engaging in life with the dogmatic determination to achieve, a range of volunteering activities were embarked upon.
University as an independent student was pursued, and passion for making a difference to the lives of others was sparked. The more involvement in the world of disability, the more understanding of differences was gained, alongside changes in home and family life.
Experience has been gained through different job roles within the world of disability and in the role of foster carer for children. After being approached to set up a support group by parents with children on the Asperger end of the spectrum, High Five was created. It soon became very apparent that the descriptions in that meeting were of the masked inner self.
Skipping some more time and with the arrival of children, soon, the autism diagnostic pathway was much closer to home. Having a clear understanding of the condition, and indeed personally questioning, the journey for all the females began. Here we are today as a family, with all the females diagnosed with ASC.
High Five, now over 10 years old, involvement in the Northamptonshire autistic community over the last decade and more, along with a lifetime of lived experience, has given rise to wanting to see change. There are many amazing bloggers, champions and activists for change who are doing a fantastic job of altering perception and generating awareness.
En-Fold was born from my passion and drive to be part of a change that sees individuals and families impacted by ASC getting the support and information that they need. All too often, once a diagnosis is given minimal explanation is offered, or information on what support is available. This system navigating and setting people up equipped for their life journey is En-Fold’s mission, and something I am proud to be taking forward.
My diagnosis has given me an explanation of who I am and why I am the way I am. It is not an excuse, but it gives me a reason for the things I find so difficult, and therefore permission not to beat myself up (so much). Many people will look at me, and see a confident, intelligent and organised individual – certainly in the ‘you don’t look autistic’ group, Grrrr. Only those who know me well will see the critical self-reflecting perfectionist.
Within my ‘professional’ mode, I am articulate and capable, and yet the challenge and anxiety experienced around the unfamiliar, unstructured or emotive can be debilitating. Every activity, is planned and simple changes are hard to deal with. Do I view my autism as a disability – Yes I do! Do I think it makes me less a person – NO! There are some things I can do as well as anyone else, there are other things I need to go about differently or use some support with.
Dare I say it, there are even some things I may be better than other at… I am an individual, and I have autism. I consider myself fortunate that my ‘special interest’ is autism. Through En-Fold, I am able to use my knowledge and passion to support other people.
Mike explains his experience of growing up without a diagnosis and his journey to being officially diagnosed as an adult, and the support he received from En-Fold.
[Video case study with transcript]
My name’s Mike Williams, I’m 35, and as of 15th May 2020, I received an official diagnosis that I was born Autistic.
The lead up to my diagnosis was constantly staccatoed by miscommunications between medical professionals, waiting lists so long I couldn’t even be told a date for my next appointment and the bouncing around between numerous, different avenues of care. All bar one of which failed in offering any of the advice and support I really needed.
Another issue where I’ve received an impactful lack of support is during the lockdown due to Covid-19. There seemed to be no clear pathway or infrastructure to support someone in my situation even before lockdown measures took effect. Even though I have been told reports of huge numbers of adults being referred for diagnosis. Once lockdown measures started, mental health services and services specifically aimed around Autism and Asperger’s closed or were not taking on any “new patients”. Finding the right support pre-diagnosis was as difficult as it was post-diagnosis. Unless I paid a lot of money or had an official diagnosis, I couldn’t receive the support I needed from anyone.
Along my diagnosis journey, I was categorised as an autistic individual by four separate medical professionals. These were nothing more than informal diagnoses, though, and I felt I now needed an official answer so I could receive the right support. This left me in a state of limbo, confusion and frustration. My mental and physical health suffered greatly from this. I had numerous meltdowns from lack of support to the point of causing myself serious injury. I sank deeper into my already, severe depression too. My other comorbidities suffered also due to this. I was in a very dark place.
John writes about his experience of the diagnostic pathway and the impact that it has had on his life. He shares the excellent work he is now involved in with the Autism strategy for the county.
I was first introduced to Autism, (or more correctly, Asperger’s syndrome as it was referred to in 2009 and a name I still much prefer) at the age of 59 whilst I spent many, many hours on the internet investigating why I didn’t seem to ‘fit’, why I didn’t have any friends & why I felt permanently depressed. Over several months, during my investigations I created a PowerPoint slide set to capture the various issues I experienced & how they made me feel, from my childhood to the present time. As I was 59 at the time, there were many, many slides covering diverse areas of my childhood, working and family life.
Having suspected that I might be on the Autism spectrum, I asked my GP for a referral to see a specialist psychologist to get a professional assessment. The result was yup, I’m an Aspie and that’s that! Once I began to understand how this diagnosis felt, I made it my business to find out what help I could get. A superb NHFT Occupational Therapist spent an hour or so with me each week for around 12 weeks, helping me understand how I related to & could rub along with all the non-Aspie’s around me. Along the way she kindly introduced me to a National Autistic Society Training Mgr and the Northamptonshire Health Care Foundation Trust (NHFT) Lead Practitioner Autism Practice and Assurance with the intention of me contributing to Autism training sessions.
I’m now proud to say that I continue to work with both the NAS and NHFT providing staff, service users, carers, relatives and others, training on what it’s like to be Autistic. From feedback received from the majority of attendees really enjoy each training session; typical feedback goes along the lines of “it was helpful hearing from someoneone the spectrum about his life and social difficulties” On a personal level, it remains starkly clear to me that having a formal diagnosis changes nothing. I can now understand a bit of the ‘why’ I feel so isolated and sad but never-the-less I still feel that way. What I can do now however, is try to accept the fact that my brain is wired differently from the majority of people and try to use it to express myself as best I can and to try to work at a practical level with folks who clearly see and experience a different world altogether when they wake up every morning.
So, in conclusion I, like everyone else remain a “work-in-progress” You never know, I might have it all nailed down by the time I reach my 140th birthday. Over the past year or so, I feel very uplifted by the actions of many NHFT and partner colleagues who are clearly as passionate as I am about working hard to try to improve the lives of Autistic folks around the county. Within my current role on the Northamptonshire Autism Strategy Steering Group I’ve met some wonderful people doing excellent work and I’m proud to be part of it.
Jane honestly shares her journey through life to adult diagnosis via the private pathway, and her battle with mental health so often experienced by females, along with misdiagnosis.
Growing up I had always felt different to my peers. I was a ‘swot’ who loved reading and learning but my questions and way of thinking raised the eyebrows of my teachers. It got me bullied in Primary School and that in turn made me stop asking questions so much in Secondary School. I struggled to fit in but found a small group of people to call friends, people that also didn’t really fit in either. That was ok though as we had no desire to. Towards my GCSE years I became depressed and anxious…. and it didn’t go away when the exams were over.
Fast forward a few years and I had just turned 36… still a ‘swot’, still depressed and anxious. I had had some academic and professional success and I was single mother. My son had been diagnosed with an autism spectrum disorder (ASD) a few years previously at the age of 6 and quite frankly it had changed our lives. Battles with schools for provision, exclusions, a statement and professionals getting to know us as a family. A familiar theme was beginning to creep into professionals conversations with me about women presenting differently with ASD but I thought nothing of it.
I had my own troubles as I was under the mental health team, the psychiatrist kept changing and they wanted to diagnosis Borderline Personality Disorder. Not an issue except I didn’t really identify with any of the symptoms or presentations. It was a tricky time that made me examine myself…. And one Sunday afternoon I looked at ASD and it’s presentation in women…. I felt hot and panicky as it seemed familiar and then there was all those conversations with professionals. I couldn’t be could I? Perhaps it was Borderline Personality Disorder?
From then I was on a mission – to be assessed once and for all. Friends and professionals seemed bemused but were very supportive. I discovered the waiting list in the NHS was 18 months so having a bit of savings I went for a private assessment. I found an accredited psychologist, highly recommended and who also worked in the NHS. I told her I was a tricky customer as I had a trauma history and I might have Borderline Personality Disorder…. She told me that she couldn’t make any promises. I spent many hours with that psychologist – she interviewed my friends and a professional. She concluded that I have ASD – I stared at her open mouthed and then cried for a very long time. I hadn’t believed I had ASD, I had just wanted to rule it out.
Then came telling people – no one was going to believe me surely… they all did. And the NHS – they were never going to accept my diagnosis – they did, I fact they did some follow up support to my diagnosis. It seemed that the only person who needed to accept it was me…
Five years on I am there. I know change and transitions are tricky for me. I know why I am anxious and understand overwhelm. I know that noisy environments are difficult. I know I have to decompress after being with people. I forgive myself much more and crucially I understand myself. I embrace the fact that I think neurologically diversely and acknowledge that it is that which gave me the academic successes I have had. I came so close to being misdiagnosed that it brings me out in a hot sweat as I would have been left confused and distant from myself. I needed to know my diagnosis so that I could learn who I was, without it I would simply be floundering.
Cheryl provides a lived experience perspective, describing what autism is to her.
What is autism to me……took me a while to write this because Autism can be described as many different things but in reality, it is hard to truly define autism perfectly for everyone or even for myself at times, I might describe it differently on different days. Autism will probably never mean the same thing to me because it depends on what perspective I’m coming from, mother, professional, friend or me!
Autism to me is
seeing and feeling the world differently
being beautifully honest and kind
supporting and fighting for those I love
difficult times and good memories
Having empathy and compassion
having no voice to having my voice heard
being misunderstood and being accepted
sleepless nights and moments of unconditional love
quiet times and doing my favourite things
trying to figure things out that are supposed to be easy
not fitting the stereotype but having the diagnosis
confusion and clarity
wearing the mask and hiding who I am
taking the mask off and being proud of me!