A Late Autism Diagnosis: Reflections, Advice and Hope

In the year 2000, the US Center for Disease Control estimated that 1 in 150 children have autism. By 2020, that statistic grew to 1 in 36. Researchers attribute this rise in cases to increased awareness and access to screenings – which is great news for all of the families looking for answers and support.

In this article, we hear from long-time Lily-Jo Project pal, Alexis Horne, who shares her story of receiving an autism diagnosis later in life at the age of 35.

But first – here’s a quick look at what autism is and how it may affect individuals in their day-to-day life.

What is Autism?

According to the American Psychiatric Association, autism spectrum disorder (ASD) or “autism” is a “complex developmental condition involving persistent challenges with social communication, restricted interests, and repetitive behavior. While autism is considered a lifelong disorder, the degree of impairment in functioning because of these challenges varies between individuals with autism.”

Other challenges those with autism face include anxiety and over (or under) sensitivity to light, sound, taste, or touch.

Alexis’ Story

From getting bullied on the playground to participating in every gifted and talented program my school could offer, one thing was undeniably certain; I was different and I knew it from a young age. While most elementary school kids were building volcanoes for the science fair, I was studying existentialism and the existence of extra-sensory perception (ESP).

It’s not every day you ask a fourth grader to write a short essay on something they are interested in, and instead, they write a 10-page paper on the entire solar system (and insist on reading the entire paper to the class) and build a 3D model for show and tell.

Side note: to all my former classmates… I owe you a long, overdue apology for that.

Like any child, I desperately wanted friends but struggled to make them. I was bullied throughout most of my school years, to the point of having to switch schools for a period of time. I always seemed to find myself on the outside looking in, not sure how to fit in or get by.

Friendships that I thought were real, normally resulted in being taken advantage of and never realising it until it was too late. I did the best I could to fit in, always changing myself to have a better chance of being accepted. Which never really worked out anyway.

I didn’t struggle academically. I loved school and I loved learning. My brain worked quickly. I could solve problems extremely fast and then get bored easily. I often got in trouble for talking too much or not being able to sit still, and eventually was diagnosed with Attention-Deficit/Hyperactivity Disorder (ADHD).

I did my best to cope through university and my young adult years. University was a shock to my system. Not in the normal sense, where kids go off and have the time of their life, party a bit, make friends, and walk away with fun stories to tell for a lifetime.

No. Not me.

My experience was built on borderline alcoholism, eating disorders, and severe anxiety. Having roommates was hard – I mostly kept to myself (aka I hid in my room). I never understood the parameters of being a roommate. There wasn’t a rule book to follow or expectations laid out for me to live up to. My biggest goal was to make sure I wasn’t a burden and stayed out of everyone’s way. I thought I did a pretty good job… until I found out later that I didn’t.

When I entered the workforce, it was another wake-up call. I could usually only last, on average, about two years at a company before I became severely burnt out and had to change jobs. It always seems like I was working harder than everyone else but never getting anywhere. My black-and-white thinking, perfectionism, and need for clarity never played in my favour.

Why does no one else follow the rules? How come no one actually means what they say? Why do I have to try to decipher everything that is said to me and figure out how to read between the lines? Did the universe give everyone an instruction manual on how to be a functioning person and did mine get lost in the mail? 

Then… I got married. Marriage is a funny thing, honestly. One common thing about marriage is that it holds a mirror up to you and forces you to confront a lot of things about yourself that you either weren’t aware of or may have been running from. For me, it was my marriage that made me start questioning whether I had other mental health issues, if my ADHD was more severe than I thought, or if there was something else that was wrong with me. 

I would either have too much empathy or I would have absolutely none. There seemed to always be an issue with how I said things. My husband would tell me, “it’s not what you say but how you say it.” I could never get it right. Apparently, I’m a very blunt and straightforward person! 

I would do my best to try and change how I said things but I could never successfully deliver it any better, even when I tried. Many fights were started because I needed accurate, detailed information about things, which would often make my husband feel like I was questioning him, doubting him, or constantly telling him he was wrong – which was never the case. My desire for clarity often went too far without me realising it or being able to help it.

Finding Answers

I’ve always been fascinated with human behaviour. My family’s mental health issues, along with my own mental health and ADHD diagnosis, have led me to pursue degrees in Psychology and Neuroscience. I have always enjoyed reading medical journals, published studies, and watching videos from medical professionals that talk about it. I’ve also recently started enjoying listening to people share their stories, tips, and tricks on social media platforms, like TikTok.

Over time, TikTok’s algorithm started showing me videos from women with both ADHD and Autism. Every story I listened to was highly relatable to my life, and this led me to question whether I was autistic.

From there, I started reading some of the recommended books and articles on autism in females. Toward the end of 2022, I mentioned it to my psychiatrist and she encouraged me to reach out to the Neurodiversity Centre in Cape Town to schedule an autism assessment. I also took a few online assessments (which I want to point out cannot be used for diagnostic purposes, but they can indicate whether an assessment is needed) and on each assessment, I scored extremely high and indicative of autism.

My assessment took place at the beginning of 2023. The clinicians recommended I take the DISCO (Diagnostic Interview for Social and Communication Disorders) which is designed to elicit a picture of the whole person through the story of their development and behaviour from childhood through adulthood. It’s incredibly comprehensive and lasted over the course of 6 sessions spread out over several weeks.

At the end of the assessment, it was determined (and very apparent) that I did in fact have autism. To be specific, my diagnostic letter reads “the clinical information and algorithms stated clearly that Alexis Horne presents as a highly intelligent and gifted woman with a confirmed diagnosis of Asperger’s Syndrome as it presents in female populations.”

*It is important to note: Asperger Syndrome no longer exists in the Diagnostic and Statistical Manual of Mental Disorders because it is an Autism Spectrum Disorder and has been reclassified as such.

Coming to Terms With an Autism Diagnosis

I honestly wasn’t shocked by my diagnosis. I had spent so much time researching and gathering facts prior to seeking an assessment, that I already knew what the answer would be. Once I got the confirmation, I continued to gather as much information about autism in women as I could. I obsessed over the details, facts, common symptoms, and traits, and what it specifically meant for me.

I’ve heard many stories from women who have been diagnosed with autism later in life, and I find myself in agreement with many of their sentiments and feelings around it. Like others, part of me feels extremely relieved and validated. I now know that there isn’t anything wrong with me – and I’m not going “crazy” either. Looking back on my life, I now understand why certain things were so hard for me. It now makes sense the way that I handled (or couldn’t handle) various aspects of my life.

On the other hand, part of me is deeply sad – sad for the child in me that didn’t get the resources and support that she needed and deserved growing up and the unnecessary hardships she had to endure because of it.

Over the course of my life, I’ve spent a lot of time in therapy and have seen a multitude of psychologists and psychiatrists. Time after time, I have been told that I just have severe depression, anxiety, and trauma (females are commonly diagnosed with these when they are actually undiagnosed autistics). I’ve always questioned why nothing up until this point has ever helped me. Now, I can breathe a sigh of relief knowing that my depression and anxiety aren’t actually the ones running the show – they are just secondary symptoms of my autism and the autistic burnout I’m experiencing. Moving forward, we can shift gears and focus on providing me with the support and resources I need as an autistic person instead.

To this day, I still have mixed emotions about my diagnosis. It’s quite overwhelming being 35 and finding out something this major that drastically changed my life and existence as I once knew it. I have moments where I break down from sadness for my younger self. I also have moments where I’m proud of 35-year-old me for having the self-awareness and confidence to search for a better understanding of not just who I am, but why I am the way I am. 

Navigating a New Normal with Autism

This diagnosis has definitely been an eye-opener for many aspects of my daily life. Of the friends I’ve told, some have been caught off guard by my diagnosis; perhaps because the stereotypical viewpoint of autism is still quite skewed. For example, many people don’t actually know that autism can present differently in women and girls compared to boys and men. Other friends, however, have responded with statements like, “Oh, yeah, of course you’re autistic – I thought you knew that already.”

Lately, I have been more aware of my behaviours, symptoms, and feelings. I’ve attempted to be more gentle with myself in understanding my reactions and why I react in certain ways to various things. I’ve also started speaking up a little louder – fighting for the little girl inside who was never fought for – allowing myself to slowly become more unapologetically me. 

As far as routine – I am working with my diagnosing psychologists as they give me suggestions and recommendations for how I, and those around me, can best support myself going forward. Some of these include taking more breaks during the day, purchasing earplugs that reduce sensory stimulation, and incorporating more baths before bed to help destress after a highly stimulating day. I also need quiet time and space after finishing work so I can decompress without being overstimulated by my dogs or having to engage in more conversations before I’m ready. 

Other Factors Influencing My Diagnosis

Autism in Women and Girls

It’s more common to hear about children being diagnosed with autism than adults. It’s also important to note that it’s still more common for boys to be diagnosed with autism than girls. In fact, much of what we know around autism and the stereotypes that go with it are heavily based on boy phenotypes, excluding many factors, symptoms, and experiences of girls and women.  

This leaves many girls either undiagnosed or misdiagnosed as children. Psychology Today reports that there are several factors that account for this, such as:

• Girls with autism present differently than boys and therefore don’t fit many of the autism stereotypes. 
• Much of the criteria for diagnosing autism is centred around studies conducted on autism presented in boys. 
• Autistic girls have been shown to have a greater desire to have relationships and be more social than boys, which has led to a greater ability in masking their autism in order to better fit in.

When reflecting on my own experience, these factors really resonate with me. For example, my ability to mask in social situations and relationships tricked not only others, but even myself. 

When I was diagnosed, I was certain that “masking” wasn’t something I had ever done. But slowly, I began to reflect and realise just how much I masked, and how good at it I’ve been from such a young age. 

Part of my masking has resulted in changing myself in every situation I’m in, or with each person I’m with. I’ve only realised now that I don’t know what my true identity is. Who is Alexis, the unmasked version? It’s something I’m now taking steps to discover. 

Autism and ADHD

Prior to 2013, psychologists and clinicians were unable to give an autism diagnosis if an ADHD diagnosis had already been given. 

It was previously believed that both autism and ADHD could not co-exist. However, when the newer version of the Diagnostic and Statistical Manual for Mental Disorders (DSM-5) came out in 2013, it eliminated that roadblock and allowed for the joint diagnosis of both ADHD & autism moving forward. We now even know that an estimated 1 in 3 children with autism also have symptoms of ADHD. 

Personally, I was diagnosed with ADHD as a child (prior to 2013) and I’m a female. It now makes sense why I was left undiagnosed for so long. 

Unfortunately, I’m not the only person getting diagnosed with autism later in life. There has been an influx in cases of autism in adults, and thanks to TikTok and other social media platforms, more people are starting to share their stories and raise awareness.

My Advice for Others

It’s important for people to understand that having autism is a beautiful thing. Our brains simply process the world around us in a different way – and that doesn’t mean we are bad, wrong, or defective in any way. It’s also not a mental illness.

In fact, there are several common strengths that individuals with autism can have, such as: 

• Precise and detail-oriented
• High levels of empathy 
• Highly integral, honest, trustworthy, and reliable 
• Exceptional problem-solving skills
• Expertise: in-depth knowledge and high-level skills
• An extremely strong sense and passion for justice and fairness
• Average to above-average intelligence 
• Non-judgemental listening – free of prejudice
• Logical thinking 
• Understanding rules and sequences
• Strong focus on enjoyable tasks and special interests
• Honest and direct communication
• and so much more! 

I’ve been lucky to have a relatively supportive journey. Though, I know this is not always the case for others. Regardless of the journey, I would encourage people not to give up – if you suspect you might have autism or are seeking an assessment, please know that your feelings are valid and you should continue to fight for what you are seeking. 

If you have a loved one who has recently been diagnosed with autism, I would encourage you to be loving and supportive. 

This might seem harsh, but your feelings on the matter (whether you agree, disagree, or believe that the person is autistic or not) is irrelevant at this time. For someone to come to the point where they are seeking an assessment means they have already battled for a long time, questioning whether this is something they should do or not; doing the research, seeking answers, and questioning themselves. So, the only thing they need at this time is support and encouragement. 

With that being said, a positive autism diagnosis can be a shock to everyone involved. It affects the whole family – and I would highly recommend seeking psychoeducational sessions in order to further understand the diagnosis and learn how to better support your loved one(s) in the best way possible. Read books, educate yourself, listen to stories of others who have been diagnosed with autism, and listen to your loved one’s stories. Most importantly, be willing to actively listen to them when they start sharing their needs and how they can best be supported as they continue to navigate this journey and diagnosis. 

Looking Ahead

For me, personally, navigating this diagnosis has been both difficult and liberating. On one hand, it has connected several dots for me and helped me understand many things about myself that I could never understand before. On the other hand, it’s been hard to unravel 35 years of my life and how I originally knew it to be – to now see it and understand it in a completely new light. 

I have spent a lot of time reflecting on my past, and now that I know I’m autistic, many of my memories and experiences make a lot more sense to me. 

Looking ahead, my emotions are honestly quite mixed. I’m definitely excited about certain aspects of my future, knowing that I can move forward with more clarity and understanding about myself and why I am the way I am. I’m also excited to receive the recommendations from the clinic on how to better support myself moving forward and in various aspects of my life (home, work, socially, friends, family, etc). 

On the other hand, there are aspects that make me nervous. Autism is still highly misunderstood and stigmatised. The spectrum is also very large and many people think that we are all the same, and that’s not actually the case. These stigmas can negatively impact my career and my future, which means I need to carefully navigate the waters of who I tell, and how much.

At the end of the day though, I feel very lucky to have found diagnosing clinicians that are incredibly caring and supportive of those who seek out any type of diagnosis with their clinic. Having the support of my clinicians and loved ones is what makes it easier for me to look at my future and know everything will be okay.

Additional Resources

Embrace Autism

Embrace Autism is a wonderful website that provides extensive research and information on autism in both children and adults. It was founded in 2018 by Dr. Natalie Engelbrecht MSc RP ND & Eva Silvertant B.Des, who are passionate about providing accurate research on autism and making it accessible to everyone. Their website includes several assessments for autism and ADHD which cannot be used as diagnostic material, BUT, can be used to determine whether a diagnostic assessment may be necessary or encouraged.

The Adult Autism Center

The Adult Autism Center provides a lot of resources for adults with autism – especially those with intellectual or developmental disabilities. Their blog articles are extremely informative, like this one on Autism in Women and the differences between men and women with autism.

The National Autistic Society

Based in the UK, The National Autistic Society not only offers a lot of information, but they also work to help provide resources such as employment, residential services, diagnostic services, and much more.

Autism Society

The Autism Society has been connecting people to the resources they need through education, advocacy, support, information and referral, and community programming for over 58 years now.

Recommended Books

• Spectrum Women by Barb Cook & Dr. Michelle Garnett
• Everyday Aspergers by Samantha Craft
• Women and Girls with Autism Spectrum Disorder by Sarah Hendricks
• Odd Girl Out by Laura James
• Unmasking Autism by Devon Price, PhD
• Autism in Heels, The Untold Story of a Female Life on the Spectrum by Jennifer Cook O’Toole
• I Am AspienWoman: The Unique Characteristics, Traits, and Gifts of Adult Females on the Autism Spectrum by Tania Marshall

Originally from the USA, Alexis is living in South Africa and has spent several years volunteering with nonprofit organisations; working with orphaned and vulnerable children, youth at risk, and young people coming out of a life of crime and gang culture. She is passionate about mental health and is working towards becoming a Clinical Psychologist/Neuropsychologist in the near future.

Other articles featuring Alexis:

• How to Self-Care When Battling Depression: Alexis’ Story
• Interview with Alexis Horne: 5 Things I’ve Learned About Mental Health