Finding Freedom from Shame

by Chessie Renata Hudson

Chessie Renata Hudson (she/her) is a Contracts Specialist at Gallagher Re. In 2022, at the age of 33, she was formally diagnosed with autism and dyspraxia. Chessie changed her name by deed poll in June – you may know her by her former name, Francesca Marie Alcock.

Since my autism and dyspraxia diagnoses just over two years ago, I’ve made several big changes. I’ve turned vegetarian, now work from home full time, and have legally changed my name by deed poll.

The biggest change of all, however, is how I feel about myself. I’m finally free from the dark cloud of shame that I’d lived under for three decades.

You may be wondering how that cloud formed in the first place. Let me explain.

“You’re too sensitive”

“Why are you so quiet?”

“You’re messy and lazy”

“Grow up!”

“Stop talking about numbers all the time!”

“It’s easy, just try harder!”

This is just a small sample of the onslaught of criticisms I received as an undiagnosed neurodivergent child. Often, these were accompanied by a look of total disdain. With each expression of contempt, the cloud got bigger and bigger.

I also couldn’t understand why things that seemed to come so easily to my peers, like making friends, tying shoelaces and riding a bike, were so hard for me. The cloud grew bigger still.

In the absence of any other explanation, I concluded I must be the problem. I viewed myself through a lens of visceral disgust and self-loathing.

I tried to mould myself into someone acceptable.  I concealed my true interests and replaced them with socially acceptable ones. I taught myself to appear bubbly and extroverted by mimicking my favourite TV presenter Davina McCall. I suppressed my emotions.

The tiny bit of self-worth I did have came from my intelligence and academic achievements, which brought me the approval and praise I so desperately craved. I was The Clever One, top of the class and first in the family to go to university. I became a perfectionist who wouldn’t let myself be anything but excellent academically and professionally and berated myself for the smallest of mistakes. I had to keep being The Clever One, because if I wasn’t, I was worthless.

My diagnoses of autism and dyspraxia were vital as they started my journey to self-acceptance. I realised I wasn’t messy and lazy; I had executive function difficulties.  I struggled to catch a ball because I was dyspraxic. I wasn’t deeply flawed, simply neurodivergent.

Through a lot of therapy, support from the neurodivergent community, and the healing power of music and films, the dark cloud of shame that I’d lived under nearly all my life finally lifted. I now respond to myself with deep compassion instead.

Now, instead of hiding the neurodivergent parts of me, I embrace them. I’ve come to realise that the parts of me that I once hated and hid, like my deep sensitivity and childlike sense of wonder, are actually the best parts of me. I celebrate my special interests as my greatest source of strength and joy, and know that without them I wouldn’t have experienced some of the best moments of my life, like visiting Australia.

My new-found sense of self-worth allowed me to make other positive changes in my life. After years of living in chaos, I’ve finally been able to get my flat clean and tidy. As my self-esteem is no longer based on my achievements, I now have a healthy work-life balance. Now I believe my needs are worthy of consideration, I’ve been able to ask for adjustments and have learned how to set boundaries and to say no.

Although the dark cloud of shame has gone, it’s left some scars. I’m currently in a deep autistic burnout caused by years of perfectionism and trying to be someone I wasn’t. Although my self-worth no longer depends on my intelligence, I sometimes panic when I don’t feel like The Clever One, such as when I don’t know something at work which I think I should. Even as an adult, I’m constantly worried that I’m ‘in trouble’. Although I’m reconnecting with Little Me, I don’t fully remember who I was before the mask went on and I doubt I ever will. The rage and disgust I once directed at myself is now rightly targeted at those who made me feel like I was broken, but some days, I think it was easier to hate myself than acknowledge the extent to which Little Me was mistreated by those who were meant to look after her.

Sadly, experiences like mine are very common in the neurodivergent community. Experts have estimated that, on average, children with ADHD receive 20,000 negative messages about themselves by the age of 10, a number which is just staggering. I would expect the numbers to be similar for those with other neurodivergences.

I wish people would think before saying something that will cause lasting damage.

But most of all, I wish for other neurodivergent people to see their own worth too.

Words are tools.

Most of you who know me, know that I didn’t realise I was autistic until I was 30.  I’d spent my entire life before then being treated differently, not understanding why, and coming to the conclusion that there was something different about me, then flailing to uncover what it was. I settled on “weird”, “awkward”, “bad at people” and “a nerd”.  Those covered most of the social challenges I found myself facing.  Diagnoses of depression and anxiety then accounted – or at least put a haphazard label on – the agoraphobia, disassociation and long bouts of Inability To Manage Life that I found myself falling into. 

It was a friend’s pursuit of an autism diagnosis, and our friend group’s collective support and guidance through diagnostic questionnaires, that led me to my own neurodivergence.  Seeing myself reflected in my friend’s experiences, and realising that those experiences matched those of a whole community of people.   

I’ve told this part of the story before. 

It took time for me to embrace the term.  And at the time, I very definitely put a line between the notion of myself as an autistic person, and myself as a disabled person. 

That’s the part i haven’t talked about, yet. 

There were a few things that contributed to this feeling.  A big part of it, for me, was feeling like I didn’t experience “enough hardship” to “count as disabled”.  And a part of that, of course, was that I didn’t yet recognise all of the aspects of neurodivergence that I experienced. 

I occasionally lose the ability to speak.  It might surprise you to learn that I didn’t realise this was something I experienced until after I learned I was autistic, and read stories of other people like me describing their experiences. 

I am not non-verbal or non-speaking.  Rather, I find that my verbal skills are unreliable and tend to get worse as a reaction to chronic and acute stress.  Some days this might impact me as an additional clumsiness with words, forgetting how to say things, having long processing pauses and stumbling, stuttering and generally having a hard time speaking.  Other times, it can seem like there’s a block between my brain and my throat, and another between my throat and the world.   

The clumsy, stuttering end of my verbal spectrum was easily passed off as a symptom of either my “bad at people” self-diagnosis or my “anxiety” diagnosis.  The more severe end, well, to be blunt for a large period of my life the most significant sources of chronic stress were people who rather preferred my silence, so there wasn’t much pressure to communicate.  And where there was, again, it was easy to misunderstand my experience as one of “too anxious/scared” rather than “my body physically will not do it”. 

That misunderstanding/assumption/justification/minimisation cycle will be familiar to many late-diagnosed and self-identified neurodivergent people.   

I had this idea in my head, borne of a thousand tiny cuts, that there was some threshold past which it was acceptable for me to call myself disabled, and that I didn’t meet it.  An idea that had it’s roots in every time child-me saw an adult complain to another about whether people were “justifiably” using disabled parking spaces, accessible bathrooms or other resources.  In every “are they faking it” so-called news article trying to prove that a person using a wheelchair is doing so unfairly because they were seen walking a few steps at some point.  An all-or-nothing approach to the world that says that if an individual doesn’t exist on the furthest possible end of an experience of struggling then they aren’t deserving of support.  An approach that suggested there was something bad, or shameful, about being disabled, and that it was therefore best to avoid the label. 

Which is funny.  Because I’ve spoken before about the power and importance of labels.   

Of how, before I had access to the label “autistic”, I was instead given by the world the labels “weird”, “awkward”, “naive”, “rude” and “unlikeable”.  Of how, before I found my queer community and learned of trans identities beyond the binary I lived under the label of “bad at being a woman” and “mannish” and “technically a girl but failing at it”. 

Words are tools.  As one of my favourite musicians The Narcissist Cookbook says in their glorious song Gendering Teddy,  

“New words are new tools, which can be used to build a marginally better world right now, and maybe many, thousands of years in the future, these new tools that we drop and break and wield clumsily will be used in ways we can't even conceive of today; to build miraculous, unimaginable structures, with our distant descendants standing atop them, being the people that we always wanted to be.” 

When we have language to describe who we are and how we experience the world, we have access to tools that enable us to advocate for ourselves, to find community and common-ground with others, to raise a collective voice about a shared need.  It’s the reason people ban books, and try to legislate what can and can’t be discussed in the classroom. 

The social model of disability tells us that people are disabled by the environment and society.  That doesn’t mean we don’t have challenges related to anything internal to ourselves, as Nina Tame puts it very well in this article for The Valuable 500; 

“In contrast to the Medical Model, the Social Model states that, yes, I have a medical condition, but it’s the world that disables me. Now don’t get me wrong, that’s not to say that my Spina Bifida doesn’t come with pain and challenges. However, the societal challenges I face often disable me more than my actual disability. 

Put me in an accessible shopping centre where my wheelchair can zoom around, and I won’t feel disabled in the same way that I do when I can’t physically get in somewhere because it doesn’t have a ramp. Or the ramp is so steep that I need help getting up and down it. I can’t walk, but my wheelchair solves this problem. It’s inaccessibility that’s the disabling thing.” 

I have faced, and continue to face, challenges related to my autism.  I get migraines more than most people.  I can’t always tell when my body needs something until the need becomes urgent.  It takes me time to process my feelings around events and that can leave me vulnerable to manipulative people.  I don’t always understand other people’s emotions.  But the biggest challenges come from the way the world is set up to suit some people, not me, and the way those structures are invisible and unconsciously enforced. 

Disabled is not a bad word.  Any more than autistic is. 

I am disabled.  And I’m glad to have that word available. 

GAIN’s Support for OneFamily’s Open Letter: A Call for Reform on Access to Child Trust Fund Savings for Vulnerable Young Adults

At GAIN, we are committed to advocating for fairness and accessibility in all aspects of life, including financial systems that impact young people, particularly those with neurodivergence.

We fully support OneFamily’s call for urgent reforms to address a system that has locked an estimated 80,000 young adults out of £200m in savings. This issue, affecting families across the UK, is especially challenging for those with neurodivergent children, who already navigate a complex system that often fails to meet their needs.

The current system forces families of young adults with mental incapacity to apply to the Court of Protection to access Child Trust Fund (CTF) savings. This process is lengthy, costly, and distressing. Families are burdened with legal and financial hurdles for amounts as low as £2,000, making it impractical for many to pursue. Campaigners estimate that by 2029, £200 million in savings could remain untouched if no changes are made.

As leaders in the financial services industry, we support the call led by OneFamily and other stakeholders for a streamlined, government-backed solution. The call comes in an open letter to Heidi Alexander MP, Minister of State, Ministry of Justice.

For years, CTF providers and key industry voices have advocated for a government-led solution. In 2021, the Ministry of Justice introduced the Mental Capacity Small Payments Scheme, and a public consultation followed. By February 2023, despite 87% of respondents affirming the scheme’s necessity and potential benefits for vulnerable children, the proposal was ultimately rejected. We are, however, encouraged by the industry-driven solution from OneFamily, Foresters, and The Investing and Saving Alliance (TISA), which has already simplified access to CTF savings for around 2,000 families. This collaboration within financial services, developed with input from the FCA shows the power of joint efforts to create real change. Yet, with only 70 applications to the Court of Protection for CTF access over three years, it’s evident that the system remains largely inaccessible for many families.

We are calling on the government to support the industry-led solution to streamline the process and reduce complexity for young people with disabilities and neurodiversity. By adopting this approach, firms can ensure that more young people and their families benefit from a simplified, accessible system. This will help close existing gaps, provide greater access to Child Trust Funds, and extend participation beyond individual firm customer bases, enabling broader access at scale.

At GAIN, we are particularly concerned about how this issue impacts neurodivergent young adults. Families with children who have neurodevelopmental conditions, such as autism or intellectual disabilities, already face significant challenges. We recognise that the system’s complexity and assumptions about mental capacity can disproportionately impact neurodivergent young people, who may be assessed as lacking capacity at 18. This underscores the need for solutions that respect and accurately assess individual needs. According to the National Autistic Society, 700,000 autistic people in the UK, with around 2% of the young adult population affected by autism. In addition, 1 in 7 people in the UK are neurodivergent, based on a broad estimate of the prevalence of various neurodivergent conditions, with around 1.5% of young adults aged 18-24 have a learning disability (Public Health England, 2023), and 70% of autistic individuals also experience mental health challenges, such as anxiety or depression (National Autistic Society). These neurodivergent young adults often struggle with complex systems, including the legal and bureaucratic processes needed to access savings. The additional burden of navigating the Court of Protection process exacerbates the stress of securing the necessary support, further isolating vulnerable young adults who need these financial resources to support their transition into adulthood.

By supporting this campaign, GAIN is advocating with our peers for a system that is truly inclusive. One that ensures vulnerable young people, and their families are not penalised by an outdated process, ensuring that the savings intended to support these young people are not left dormant but are used to improve their lives.

We believe every young person, regardless of their mental capacity or neurodivergence, deserves the opportunity to thrive. Through collective advocacy, we hope a fair and accessible solution will be found, ensuring financial systems work for everyone.

References

1. National Autistic Society – Autism in the UK:URL: https://www.autism.org.uk/about/what-is/autismThis page provides an overview of autism in the UK, including the statistic that approximately 700,000 autistic people live in the UK.

2.  Public Health England – Learning Disabilities in the UK:URL: https://www.gov.uk/government/publications/learning-disability-and-autism-statisticsThis publication provides statistics on learning disabilities, including the 1.5% figure for young adults with learning disabilities.

3.  National Autistic Society – Mental Health in Autism:URL: https://www.autism.org.uk/advice-and-guidance/professional-practice/mental-health-and-autismThis page highlights that 70% of autistic individuals experience mental health issues, such as anxiety and depression.

4. The statistic that 1 in 7 people in the UK are neurodivergent is based on a broad estimate of the prevalence of various neurodivergent conditions, including autism, ADHD, dyslexia, dyspraxia, and other cognitive or neurological differences. This figure is commonly cited by organisations like the British Psychological Society (BPS) and NHS England and is used to represent the approximate percentage of the population affected by neurodevelopmental differences.