Laura: My Autism Story

In honour of Autism Acceptance Week,  Laura Jackson (Administration Officer for Dundee) shares their experience of navigating life and work as a neurodivergent person.

My diagnosis journey:

I spent most of my life knowing something was different about me often feeling ‘Broken’ and ‘Quirky,’ just trying so desperately to fit in. I’d often try voicing the struggles in my head to those around me, but not be able to, leading to me being labelled as ‘sensitive’, ‘difficult’, and ‘attention seeking’. All I was trying to do was ask for help, advocate for myself, and set boundaries.

At the grand old age of 26, I finally found a doctor that listened to me. It was such a relief. However, the next steps were not so pleasant.  Six months after being referred, unbeknownst to me and my doctor, the community mental health team rejected my referral but did not communicate this to anyone. I only discovered this by accident. My doctor had to complain to the health board, and they reluctantly gave me an appointment, which brought a whole load of emotions. I met with the psychiatrist after a couple of months who stated, after I handed him an 8 page document of things I had wrote when experiencing ‘shutdown’ or ‘meltdown’ or ‘spirals’, that he was sending me for Autism Spectrum Condition (ASC) diagnosis.

I was then told it could be a 3-year waiting list, but because I had previous interactions with the team, I got seen quicker. The process is not the same for everyone. I had a terrible time trying to access support, but hopefully I am finally there, but not everyone receives this. Some individuals are not even at the stage of being able to receive help – my friend has been waiting 3+ years and there is no sign of an appointment coming through, but no support has been provided in the meantime. This has left me feeling incredibly guilty. This postcode lottery means that people can often feel overwhelmed or overlooked before they even begin the diagnostic process.

The process is not equal and differs for every person and not everyone has supportive friends or family helping to advocate for them.

I have just finished my assessment process which was made up of 12+ appointments asking in-depth questions about school, upbringing, family, relationships, and work, but also exercises that tested my co-ordination. No bit of my life was left unturned. I was told that my psychologist was going to recommend ASC and ADHD to be diagnosed to add to my already Dyspraxia, Dysgraphia, Dyslexia, anxiety. Now, it is a stressful waiting game as they produce their reports and send them off to another group of people who will decide if I receive a formal diagnosis based on these reports, having never met me whether they think I met the criteria.

The process is tough, not person-centered at all. It is very emotionally draining and results a lot in the feeling of imposter syndrome. Carrying this out whilst navigating work has been challenging, but with a supportive Local Management Team, Operations managers and colleagues, it has made it easier knowing people understand.

Things they have done that have helped:

  • Been patient
  • Been understanding
  • Listened
  • Taken the time to understand how I think and process
  • Asked how my assessment is going/seemed interested
  • Been flexible.
  • Reassured me
  • Let me take 5 and come back if overwhelmed
  • Not judged

Talk to younger self/Emotional.

I hope that going through this painful diagnosis process will save me from struggling as much in the future, allowing me to improve my self-talk, coping strategies, and work with my body instead of against it. I want to start being able see the positives of being neurodivergent and what I can bring to the table in work and personal life.

I often stop now and make myself think how I would speak to my younger self. What would I say to them? What support did they need?

I wish I could tell young Laura in these pictures that life will get better. People will start to understand us and we will find people just like us; we are not alone.  I wish I could tell them that someone will listen eventually, you will find colleagues who understand and people will love you for what people once detested or bullied you for. Schools will start to realize that not all support adjustments are obvious and diagnosed straight away. And you will see this as your brothers, who are ten years younger than you grow up. Take comfort, the world is changing for the better.

I wish I could tell younger me that I will find a way to express myself and love every single aspect about myself that I used to try and hide. I wish I could tell them that being Autistic could be the missing element, the key bit of information that they knew was missing but didn’t quite understand. That actually being neurodivergent is often linked to co-morbidities with other illnesses, things that have gone undiagnosed with my whole life. It could open the door to finding answers about why I get so ill with viral infections, fatigue, issues with joints. That Autism can have a physical affect on your body also, trying to fit in. I wish all the different doctors who seen me could have pieced this all together. I want younger me to know that there will be one day where your brain and body are not at war.

I wish I could tell them how this journey of self-acceptance has benefited my life in so many ways: choosing those relationships that allow me to unmask and where I feel accepted, can be myself. This highly introspective reflection that has come from unmasking has allowed me to understand myself in a whole new way. Describing every aspect of yourself to someone who knows nothing about you, describing how you interact with the world at differing times in your life. Through this process this has allowed me to reflect on myself and how I feel about my gender and sexuality and identify as pansexual and non-binary. Often, it is mistaken that people are queer because they are autistic but it is because we have had to completely strip ourselves apart and rebuild because we have navigated life how we think we should not meet our own needs.

How my brain processes:

I think it is important to be aware that, because of my social anxiety that has come from not understanding social cues, I script every conversation in my head prior. I don’t think through just one script, but numerous differing versions of the same conversation with different outcomes so that nothing comes as a surprise; meaning my face is less likely to show that I am absolutely baffled by something (which people often mistake as me thinking they’re wrong). My friends often describe my head like an encyclopedia with sections for each area and person, if the section changes it can take me quite a while to adjust; so patience is key.

Know that when I am having conversations with you that there are factors that may not even seem apparent. I am potentially overwhelmed by the environment around me. The lights are bright. Am I making enough eye contact? Is it my turn to speak? Have I spoke too much? Is this person bored? Is it okay for me to say my opinion or will this be misconstrued? Has their tone and body language changed? I can probably hear the phone ringing in the background, a car alarm in the street, roadworks. Anything. I could be struggling with the fabric of my clothes touching my skin, someone being close to me, even office politics or the environment can be overwhelming or difficult to navigate. Often my brain sounds like a radio playing 5 different stations at the same time.

All of this information from my environment is trying to be processed at the same time, and often I am trying so hard to appear socially acceptable that I’ve not actually processed anything that is being said to me.  Patience is key as I may ask you to repeat what you have just said as I may be experiencing sensory overload, rather than being rude or ignorant.

I may not have an answer for you because my processing speed is slower, and I need time to let it sink into my brain and then I can get back to you. Know and understand I may have a different way of working to you, and that neither way is wrong. It is just my brain cannot function or work that way. But, with adaptations I have made, I can still carry out the job. It may just look slightly different and that is okay.

The current medical model of disability states that I am disabled by my condition and adjustments need to be made to make me fit into society. In contrast, the social model of disability states that I am not disabled by my condition but by society and its inability to deal with the ‘average human’ who does not actually exist. I do not suffer from Autism I struggle because of how I am treated!

I often joke that the world is autistic, bear with me! The world can be very rigid, with people often having the attitude of “this is the way we’ve always done things”. However, this type of black and white thinking is a stereotype that is often construed onto people with Autism; pathologising the way we interact with a world that, itself, often lacks flexibility. The importance of good conversations is crucial. Take the time to listen and process what those who have lived experience are communicating with you because that has taken a lot of strength and courage to do that especially when often we are dismissed once opening up to people in the past. This will benefit not only the person you are communicating with, but yourself too, supporting you to take a person-centred, holistic approach into all aspects of your life.

I prefer to be known as neurodivergent because I feel that with ‘Autism’ or ‘dyslexia’ or ‘ADHD’ people have a preconceived idea of how I should look, act, and feel. In contrast, ‘neurodivergent’ is a new term that makes people seem to ask more questions, seems more person centered. They are not automatically assuming any one thing about me, and to be honest that is so important to me. Though I would like to point out that this may not be the case for everyone autistic, dyslexic or adhd individual. The main takeaway is we are all different, autistic, or not and this should be celebrated and considered.

How to help/accommodations:

Following on from the above statement: it’s about changing our mindset away from if this person has this condition then they need this support and more towards having good conversations rather than seeing the person as the label. For example, a follow up email detailing the discussed point and actions, can help clarify someone has understood what you have said to them and ensure that you do not just assume.

As a colleague that you may interact with, I think some helpful things would be patience, creating safe environments, being non-judgmental, and realising that we can deal with big issues that others may struggle with but can sometimes find ‘simple’ tasks overwhelming. But, with small adjustments or flexibility we can do it.

It is important that we reframe how we think of adjustments and treat everyone we meet with the values of Carr Gomm, and not just to those who have an official diagnosis and hopefully I have demonstrated just how difficult getting a diagnosis can be. Self-diagnosis is valid so someone can start to access supports whilst they wait diagnosis or if they do not feel able to go through the process. I think everyone would benefit from just being able to voice their struggles or required adjustments and not feel invalid or not worthy because they do not have a diagnosis. Celebrate uniqueness because it will help us in every aspect of our lives.

Neurodivergence is just another way of seeing and processing the world. Allow people to bring their whole selves to everything they do. When accommodations are put into place for autistic individuals, we can be more productive but if these are not put in place it can affect our wellbeing, productivity, how we perform at work, work relationships, and life outside of work as we have had to use all our spoons for the day and have none left for after work. If you would like to know more about spoon theory and how this relates to autism, then click this link.

Let us help break down barriers, challenge stereotypes and misconceptions.

  • Be clear and concise
  • Open and supportive
  • Embrace interests
  • Be accommodating
  • Raise awareness

Be the voice of change! Be the voice others may not have discovered in themselves yet and show them it is okay to be yourself.  Let us make accessibility a true reality for all and not just another buzz word in society. Help show the world being autistic is not a negative but something to embrace and celebrate.

I think I have found a workplace that truly accepts me for me, here at Carr Gomm.