Lived Experience of an ADHD Diagnosis in Adulthood - Let's Move Toward ND Affirming Practice
By Tiffany Flynn
When I was in my early thirties, I met someone who would change the way I thought about myself. She was a woman whose life had, in some respects, mirrored my own. We got along so well I felt because we shared so many traits in common. We’d both had issues with schooling, with making friends, with trauma and with the way we moved through and related to the world. A few weeks into our friendship she told me she had been diagnosed as an adult with ADHD. We talked about how girls and women are so overlooked and underdiagnosed. She shared with me the process she had been through to get diagnosed and the benefits she felt had come with that diagnosis.
I spent weeks thinking about these conversations, about the similarities in our life experiences and our personalities. I started researching ADHD late diagnosis in women. I felt like I had discovered a secret I never knew I was keeping. Knowing that my brother-in-law had been diagnosed with ADHD as a child and that he saw a psychiatrist regularly, I asked him for the details of his doctor and made enquiries about an appointment.
I was asked to share my school reports and, if I couldn’t locate those, a letter from one of my parents explaining the kinds of challenges I faced when I was a child. My mum, convinced there was nothing “wrong” with me would not write a letter, and so I turned to my dad who enthusiastically documented all the struggles I’d faced as a child. I talked too much, I distracted others, I was inconsistent, I had so much unfulfilled potential if only I could finish what I started, I was fidgety. Armed with this catalogue of my failings I attended my first appointment.
At the time the psychiatrist I saw was considered one of my city’s leading experts. Over the course of his career, I assume he saw thousands of people for diagnosis and treatment of ADHD. I trusted he knew what he was doing. My appointment was brief. I don’t remember if I completed a written questionnaire. I remember he asked me to do a few activities, discussed the letter my father had written and then pronounced that I did indeed have ADHD. I don’t believe I ever received anything in writing and there was no discussion about options for me, only the prescription of medication.
With the promise of feeling “normal” and my trust in this medical expert, I filled my script and began taking the medication. I was given dexamphetamines and told to come back for a review. I won’t go into the details here but the short version is that I had a quite rare, adverse reaction to the medication which was completely discounted by the psychiatrist at my review appointment. I threw my medication away and didn’t speak to another medical professional about my diagnosis for half a decade. I am still afraid of ADHD medication, and I struggle constantly with the desire for relief from my difficulties and my fear of what might happen should I start taking medication again.
Fast forward 11 years and my now adult daughter sees in me and the other ADHD women on social media a mirror of her own experience. She seeks out a referral from her trusted GP and makes an appointment with a psychiatrist we hope will give her the answers she is looking for. She completes a number of tests, some with help from me and her step-father and if I didn’t already know I had ADHD myself, I certainly would from helping her with those tests! The day arrives for her outcome appointment and she asks me to attend it with her. For the next hour I listen to him tell her all the things “wrong” with her, all the ways she is “broken” and I hear him tell her over and over again that her only hope is medication. The message I hear from him loud and clear is that ADHD is a problem to be fixed. It is a deficit, a handicap, a fundamental wrongness. I hear all the ways her life (and mine) will be terrible and less than, due to a difference in our brains that is beyond our control. Not once does he mention anything that might be a positive attribute.
We finish the appointment and he tells her that he will send her an email with some more information and resources. He also issues her a prescription despite the fact she is still breastfeeding and hasn’t had a chance to discuss the impact of starting medication with her partner. There is no discussion about whether or not she wants the medication, only the assumption that of course, she does, who wouldn’t?!
I ask her to send me the email he sent to her and what follows is another hour of me being told all the ways my life is less than that of someone without ADHD. All the ways I am incompetent, inferior, incapable and doomed to fail, my only hope is to medicate myself. I feel the tears on my cheeks before I realise that I am crying. I feel a weight settle over me. The voice that has always told me that I am not enough whispers “I told you so”. The voices of every teacher, friend, boss, and workmate who has ever told me that I am too much, not enough, should try harder, should be quieter, should minimise myself for the comfort of others echo through my head. Every time I have said something to know seconds later that I shouldn’t have, every unfinished uni degree, project or plan, every friend I have lost because of rejection sensitivity dysphoria or because I couldn’t relate to the world in the way they did presses down on me.
I am sad. Bone crushingly, heartbreakingly sad. Then suddenly I am angry. How dare this doctor, who has taken an oath to do no harm, deliver a diagnosis like this. How dare he speak only of the deficits of my daughter’s neurodivergent brain, of my neurodivergent brain. How dare he overlook all of the things that make us good at things in ways that make us assets in friendships and workplaces, if only people understood.
I may not be able to remember what I ate for breakfast but I can hyperfocus for hours on a project that I care about, that is important, that makes a difference in people’s lives. My resilience is unmatched. I may be sensitive to rejection, but I have lived a life full of heartbreak and trauma and I’m still here, showing up, being kind, giving freely of my love and trust. Resilience is my superpower. I am creative and adaptable. I can see things in ways others have never considered. I can see the big pictures and the finer details simultaneously. I know how to make people feel valued. I can take in and sort information at a speed that would make most people’s heads spin.
It's been a week since my daughter’s appointment, and I’m only now starting to be able to move back from the edge I’ve been balancing on. It has been a week of feeling the tears about to surface, of being hyper-sensitive to every sight, sound, comment, and interaction. Of feeling like at any moment I will be that person crying at work, in a cafe, in my car, at the shops. I am so very lucky to be surrounded by people who see my worth and who remind me of it every day. Who listen to me, let me cry, let me be angry and provide me with a safe space to be exactly who I am. I am grateful that the work I do every day supports a team of people who work hard to make sure no one experiences what my daughter and I experienced.
Who does your assessment or your young person’s assessment is important. You may think you are prepared for the outcome, you may think you know what they are going to say, but you can never truly be prepared for someone to tell you why your existence is less valuable than that of a “normal” person. If I didn’t have the support network and the knowledge that I have, my recovery from this experience would have been much longer. If you are thinking about having an assessment for Autism or ADHD or any of the other neuro-divergences I would encourage you to do some research about your chosen assessors' attitudes to neurodivergence and if they have a commitment to neuro-affirming practices, It could make a world of difference in how you move forward from your diagnosis.
If you don’t have the resources to be choosey about who does your assessment, ensuring you have a strong support network or gathering neuroaffirming resources before your final appointment may help to counteract any negativity you encounter. Please remember that having a neurodivergent brain doesn’t mean there is something wrong with you or that you need to be fixed. It means that your brain was designed to be good at different things and the value that can add can change the world!
Here are some tips for how practitioners can ensure their assessment process is conducted in a more neuro-affirming way:
Centre lived experience: Actively listen to the individual seeking a diagnosis, prioritising their self-reported challenges and strengths. Consider masking and camouflaging behaviours, and validate their perspective throughout the process.
Create a calm and welcoming environment: Offer fidget toys or other sensory supports if needed. If possible, ahead of time, explain the purpose of the meeting, what will happen in each meeting or session and what to expect from the process overall.
Acknowledge neurodivergence as strength: Reframe challenges through a strengths-based lens, and highlight the unique cognitive differences associated with neurodivergence. Wherever possible avoid deficit-based language and emphasise the value of neurodiversity and explain the need to use the medical model in reports and documentation and why this does account for the whole picture of a person.
Normalise the experience: Explain that conditions such as ADHD and Autism are common neurodevelopmental conditions and that receiving a diagnosis is not a negative event. Offer age-appropriate statistics and examples of successful individuals with similar diagnoses.
Offer hope and support: Emphasise that a diagnosis opens doors to understanding, support, and resources. Provide information about treatment options, collaboratively discuss the next steps and empower the individual to be involved in their care plan. Don’t assume that they want to take medication or present medication as the only option they have available to them to live a successful life (it’s not!).
Provide personalised resources: Recommend support groups, educational materials, tools and resources, and accommodations tailored to the individual's specific needs and preferences. Connect them with neurodiversity-affirming communities and professionals for ongoing support.
And finally, celebrate their courage! Acknowledge the bravery it takes to seek a diagnosis and express appreciation for their trust.
TKC Post-diagnostic Session Packs:
If you would like post-diagnostic support for ADHD, one of The Kidd Clinic psychologists can provide you with a few sessions to process and understand your recent diagnosis and the way your brain works best, along with practical support to set your daily life up for meaningful success. Contact admin@kiddclinic.com.au to book a post-diagnostic session pack (also available following an Autism diagnosis).
