Increasing numbers of girls, women and AFAB (Assigned Female At Birth) individuals are diagnosed as Neurodivergent later in life. This is because Autism and ADHD present differently for AFAB individuals compared to males. A diagnosis later in life can have a huge impact on the life of the Neurodivergent person and their family.
In this blog, Daughter and Mum – Madi and Tanya share their experiences of what it was like for them when Madi was diagnosed as Autistic. To hear about the experiences of the rest of our family listen to our PODCAST HERE.
I was 18 when the psychologist told me that I had ASD (Autism Spectrum Disorder). She had only been seeing me for a month or so one appointment per week. In one of those appointments she had me sit outside while both my parents spoke to her alone in the counselling room. I knew something was up. I had been seeing counsellors and therapists since I was 13, and despite the constant talk therapy, medication for mental illness, CBT and tests I was still struggling. Something wasn’t right until the therapist said ASD.
I remember the feeling too, this overwhelming relief that took over me as I burst into tears, but it didn’t last long. That lovely feeling of relief was taken over by blinding fear, resentment and sadness. How did no one pick up on this till now? Why didn’t I push for this sooner? Why was my mum crying too?
She sat right next to me in the room that now felt way too small.
After The Diagnosis
It took me a while to understand it all. Being born in November this all happened a few weeks before Christmas. My pre-existing fear of people and social situations was amplified by the fact that now my family all knew about this ‘new thing’ that had been added to my list of ‘issues’.
I spent that entire Christmas miserable, feeling out of place and confused as I tried to accept what I assumed was a new part of myself. I was supposed to be moving to Wellington, going to university, and starting my life… But there was this unbearable weight that brought me to a very dark place that I had been trying to shove down for a long time.
It was New Year’s when I came to the realisation that I hadn’t changed. That nothing was different, that I wasn’t different; I was still me.
Autism was a name for all the things about myself I didn’t understand. It was a name to the reason I felt so different, why I thought the way I thought. It was why I struggled so much at things others said were easy and why I excelled and found things easy that others found difficult.
And the relief came back, I finally had an answer to the question I had struggled with my whole life. And I wasn’t scared anymore.
My Experience Of The ADOS Test
I had to do a test after getting diagnosed. They said it wasn’t to prove I had ASD but instead to find where on the spectrum I was.
Since I was 18 at the time I took the adult test which scared me a bit. Honestly, it wasn’t that bad, mainly it consisted of comprehension and memory tests, remembering strings of numbers, defining words, creating shapes with blocks etc.
The thing that stuck with me the most was the fact that they said that they were testing to see if I was a ‘hidden genius’. Turns out I’m not, which hurt to hear. I had always craved validation, the ‘gifted child’ burnout had been my life. Part of me was hoping maybe I was a hidden genius even though internally I knew I wasn’t.
Reflection On My Earlier Years
Honestly, I wasn’t surprised by the diagnosis completely. Being a teenager I had been chronically online at the time of the diagnosis specifically on TikTok, which is known for its ability to sift through its endless spirals of content and create a ‘For you’ page that’s custom to you.
I was only on TikTok for a few weeks before the videos of neurodivergent content started showing up for me and I related to it; more than I should have. But even before that, some part of me had always known.
A few weeks before moving away from home as I was packing my things i came across my old journal from when i was 14. Within its pages, a journal entry entitled “What’s wrong with me?” caught my eye. I read the three-page entry and marvelled at the fact that everything past me had written were all things that neurodivergent people struggle with and experience. Even back then, I was aware of the fact that I had ASD before I was even diagnosed even if I didn’t have a name for it.
How My Late Diagnosis Has Impacted Me
I think part of the problem that caused my late diagnosis was rooted in society. My whole life the image of autism has been portrayed in a particular way, especially in the media. This specific cutout of what autism ‘should look like’ never resonated with me. Up until my diagnosis, I wasn’t aware that it was a spectrum which turned me away from the idea that I could be on it.
The idea that autism is only ‘one certain way’ – nonverbal, academic struggles, massive meltdowns etc. had been the way autism was portrayed to me in television and movies which is objectively wrong. As a spectrum, there are many different ways autism presents itself, which even medical experts can be blind to.
For example, right after my diagnosis, I saw my Psychiatrist, a male doctor, who essentially told me that I had ‘too much empathy’ to have Autism and that the psychologist was wrong. This comment really hurt me. I had struggled for so long to figure out why I felt so ‘different’ and after finally getting an answer he was disregarding it because of my level of empathy.
People with Autism can have empathy. People with ASD can have incredibly high levels of empathy, which was something that led to my diagnosis. It was like this doctor wasn’t aware of the ‘S’ in ASD which stands for Spectrum.
Things That Made It Difficult To Get Diagnosed
Another thing that hindered my ability to get diagnosed earlier was my ability to mask. I had been masking my entire life. So even in counsellor offices and therapy rooms, I had found myself trying my best to look and act like society’s version of ‘normal’.
I said what I thought would be the appropriate thing to say. I did what I thought would be the appropriate thing to do.
I had spent the early years of my life being bullied for being weird or different so I had learnt to be ‘normal’ which made it difficult for people to pick up on the signs.
It’s not exactly something I can stop doing, after masking for such a long time. It feels weird to be my authentic self around others. Even though I am at a place in my life where I am surrounded by people who understand and love me for me, I constantly catch myself trying to be ‘normal’ to try and please others.
But sometimes I find myself in a comfortable place where I can just be me, and that’s the best feeling ever.
If you’ve just been diagnosed with Autism or ADHD, or you feel like you might be neurodivergent, it’s going to be okay.
I know you might be feeling like this is bad, or that you’ve changed, but you haven’t. You’re still you. It’s just a name for the reasons you’ve felt different all your life and that’s incredible.
The Early Years
Madi was a ‘textbook’ baby. They met all of their milestones ‘on time’ just like it said in the ‘textbook’. They crawled from a really young age (five and a half months) and by 18 months old they were already stringing words together in sentences.
Even as a very young child, they were articulate, creative, and imaginative and had a unique way of seeing the world. Growing up and as an Early Childhood teacher, I had been given a very narrow view of what Autism ‘looked like’ and certainly had never heard the term ‘neurodiversity’ before. And so it never occurred to me that my bright, bubbly and quirky child was Autistic.
I was always a bit of a loner as a child and found new situations and friendships hard, so when I noticed them struggling in these areas it didn’t seem unusual to me. My neurodiversity went ‘under the radar’ for most of my life (I only really started exploring this after my children were diagnosed) and I had been called ‘sensitive’ so I thought, “Madi’s just sensitive like me.”
The Teenage Years
It wasn’t until Madi’s teenage years that I realised that something was really wrong. Madi struggled with nightmares, panic attacks, anxiety and depression. At first, I thought that this was ‘just a stage’.
I was resistant to getting help from mental health professionals due to negative experiences with therapy when I was a teen which led me to view therapy as ‘punishment’.
We had also been through a rough patch as a family which resulted in many verbal arguments between, my husband Wayne and me and I honestly thought that my children would be taken away from me because I had been a ‘bad mother’.
I really had to work hard on myself to see therapy and counselling for my children as something that would help. For many years we bounced from counsellor to counsellor, but nothing seemed to work. If anything Madi’s anxiety seemed to be getting worse. They started fainting and found school exams to be so stressful that they would pass out in them.
Getting A Diagnosis For Madi’s Autism
I felt like such a failure as a parent, but we persisted in trying to get them help. Eventually, Madi received the diagnosis that they were Autistic. I can honestly say (and I know that this sounds bad) that the initial diagnosis was a shock. They just did not fit with my idea of what Autism had traditionally been represented to me as.
I felt so much shame directed at myself because I didn’t know and I was ‘supposed’ to know. Aren’t ‘good parents’ supposed to have all the answers?
The Consequences Of A Late Diagnosis
So much of how we had parented Madi and their siblings as Autistic children in a neurotypical world caused them unimaginable childhood trauma and PTSD. This is something that I still struggle with.
The worst part is that we didn’t even know that we were doing it!
Even seemingly ‘good’ things like a family trip to Disney World and all the sensory overload that this creates can cause trauma for an Autistic person.
I sometimes feel like how I imagine a woman must feel when she unexpectantly finds out that she is pregnant at 8 or 9 months gestation.
The mother in this scenario has just been given the news that will drastically change her life. As it is so late in her pregnancy she has little or no time to prepare herself for the arrival of her child. She is reeling in shock. To further compound things, because she didn’t know that she was pregnant, she regularly consumed alcohol, smoked cigarettes and ate all the food she was not supposed to during her pregnancy.
Imagine this mother’s fear and worry that she had unknowingly contributed to irreparable damage to her baby. Imagine her horror and shame when she realises that her behaviour has adversely affected her child’s health and well-being.
Her actions may have damaged the whole life of her child for the rest of their life! She may picture others shaking their heads and saying scathingly under their breath, “How did she not know?” “It’s all her fault!” or “What a bad mother!”
I know these are not the same thing. However, the thoughts of self-blame and the feelings of fear, uncertainty, overwhelm, worry, anxiety and shame are very similar in both of these scenarios.
Re-education And Reparenting
Since we found out about Madi and their sister Morgan’s diagnosis, I have worked really hard to educate myself about Autism and ADHD and ways that I can change my parenting to meet their needs. I have also been exploring my own neurodiversity. I am passionate about using my lived experience as well as my skills as an educator and parenting coach to help other families.
If you are a parent of a late-diagnosed neurodivergent teen or young adult, please know that it is never too late.
You can always change your parenting approach. It is also never too late to make repairs with your child.
Yes, I made so many mistakes. There are definitely things that I wish I had done differently, but when we know better we do better.
There is always hope.
If you or your child has received a diagnosis of Autism or you are exploring whether or not you or your child may be Autistic and you are struggling to figure out what the next step is, please know that is totally natural and normal.
We know from personal experience that it can feel hard to know who to talk to, we know as we have been there.