Find Out Why So Many Autistics, ADHDers and AuDHDers Are Only Identified Later In Life.

Genetic link to Autism and ADHD

Did you know that if you are the parent or grandparent of a child who is Autistic or has ADHD, there is a high possibility that you could be Autistic or Have ADHD too?

Much of what we currently know about Neurodiversity is still emerging and evolving, however, research suggests that Autism and ADHD have a strong genetic link.

A new widespread study involving more than two million children across five different countries has revealed the variation in autism occurrence in the population is mostly due to inherited genetic influences.  The study found that inherited genes account for about 80 per cent of an individual’s variance in developing autism.

Emily Acraman – Altogether Autism

This means that if you are the parent of a child who is Autistic or has ADHD then there is a strong chance that you or your child’s co-parent (or both of you) may be neurodivergent too – something that many parents are unaware of.  Many parents of children who are Autistic or have ADHD (especially Mothers) only find out that they are neurodivergent after their children are identified.

Why does this happen?

My Lived Experience Of Being A Late Identified Autistic and ADHDer

I grew up thinking that I was a neurotypical person.

Looking back there were signs that I was neurodivergent. However, these were missed by my parents and dismissed by medical professionals as anxiety and depression. I was just an ‘anxious’, ‘sensitive’ person who worried too much and lived too much in her head.

I grew up with a pretty rigid picture of what Autism and ADHD looked like. So it came as a shock to me when my two eldest children were medically identified as Autistic at 17 and 18 years of age.

At first, as most parents do, I was so focused on my children’s experience. How could I get them support? How could I change my parenting approach to meet their needs? It didn’t even occur to me to look at myself or that I could be Autistic too.

Late-Diagnosed Autism and ADHD

My own internalised ableism had caused me to mistakenly think that all Autistic and ADHD people and their experiences were the same. My internal assessment of myself was against this stereotypical image of Autism and ADHD (cis, young, white boys).

Once I allowed myself to let these stereotypes go as well as listen to the lived experiences of other Autistic and ADHD individuals I came to accept that I was neurodivergent too. Read my story here.

Ironically, it was in my pursuit to understand my children’s inner world that my recognition of my own neurodivergence emerged. Many of my behaviour patterns – my social anxiety, my inability to make and keep friendships, my teenage eating disorder, my anxiety, depression and cycles of burn-out all suddenly made sense.

Are you questioning if you are Autistic or have ADHD? Download my FREE PDF with common Autism and ADHD traits in women and AFAB (assigned female at birth).

Why Are So Many People Being Identified As Autistic And/Or ADHDers As Adults?

There are many reasons why a person’s Autism or ADHD may not have been identified.

One of the main reasons is because of the non-inclusive medical and cultural perceptions of Autism and ADHD. Many people (including myself in the past) have a very narrow view of what an Autistic or ADHD person should look like. This extends the medical profession as it was initially thought that Autism and ADHD only affect cis, white boys.

I invite you to pause here and think about what the image or definition of what it means to be Autistic or have ADHD was while you were growing up.

Stereotypical Autism
Photo by Mikhail Nilov on Pexels.com

This narrow representation excludes women, gender-diverse people, those who are part of the LGBTQ+ community as well as people from various ages and races.

This is often a barrier to someone being identified as Autistic or as having ADHD. The DSM 5 (The Diagnostic and Statistical Manual of Mental Disorders – the main diagnostic tool for Psychiatrists) only started including girls, women and other races in 2022.

Our understanding of Autism and ADHD is still evolving and is still very much at a grassroots level. If you were late-identified or are questioning if you are Autistic or have ADHD, here are some of the reasons why you may not have been identified.

You Don’t ‘Look’ Autistic Or Like You Have ADHD

Due to our culture’s stereotypes of what Autism and ADHD ‘look’ like, if you do not fit this stereotype you can be dismissed from being neurodivergent.

Autistics (many of us prefer identity-first language) can be women and gender-diverse individuals of all ages and races. We wear make-up and colourful stylish clothes. Autistics can eat a variety of foods (including spicy foods) and go to parties and social occasions. We can communicate with people without flapping our hands and we can make eye contact. Autistics can have jobs and careers and be successful. Many Autistics are highly sensitive and empathetic, have happy fulfilling relationships and marriages and are parents. Not all Autistics experience sensory processing sensitivities.

ADHDers can appear to be very organised. We can be high achieving in our careers. Not all ADHD individuals are externally energetic, or impulsive.

Are you questioning if you are Autistic or have ADHD? Download my FREE PDF with common Autism and ADHD traits in women and AFAB (assigned female at birth).

Undiagnosed Autism and ADHD
Photo by RODNAE Productions on Pexels.com

Autism and ADHD Are Internal Experiences

Even though many Autistics and ADHDers may behave in certain ways that appear to be different, this is not always the case. Many neurodivergent individuals learn to mask from a very young age. (Researchers suggest that this can start during infancy for some people).

We have a strong biological drive to attach to and be accepted by those around us to survive. A baby’s brain is intuitive, intelligent and hard-wired for connection. We quickly learn through our experiences with people, places and things what attributes and behaviours get us love and affection and the parts of ourselves receive rejection and punishment. We learn to give others more of the things that get us connection and shut down the behaviours that do not.

The ‘Perfect Child’ Mask

Many unidentified Autistics and ADHDers were ‘perfect children’ who learn the ‘rules’ of social engagement really early on. We then spend our whole lives rigidly sticking to these ‘rules’. Often adapting ourselves to meet the comfort and emotional needs of others because we believe that this will keep us safe.

We internalise our Autistic and ADHD traits as we receive information from our environment that these parts of ourselves are not accepted and will get us into trouble. For example, many ADHD women do not exhibit external hyperactivity. They internalise this hyperactivity and instead have a very busy and overcritical brain and/or experience this as tension in their bodies or as stomach aches.

Many neurodivergent people are affected by RSD (rejection sensitivity dysphoria) and feel rejection intensely. To those of us who are affected by RSD, rejection can feel like a threat to our survival. We would rather abandon our own needs than open ourselves to the threat of being rejected. The mask of who others expect us to be becomes our default persona.

No one can see what is going on in your brain just by looking at you. Masking is not often a conscious decision. If you are a neurodivergent person who is an expert masker other people (and even yourself) might never notice your unadapted Autistic and ADHD traits.

Need Support? Book A FREE Call HERE

black female artist with painted vase in creative room
Photo by RF._.studio on Pexels.com

Brain Differences – Autistic And ADHD Brains Compared To Neurotypical Brains

Autism and ADHD are a type of neurotype. Our brains are literally wired differently.

Neuroscience research suggests that Autistic individuals tend to have more neural pathways compared to neurotypical individuals. This research is showing us that during the pruning of neural pathways that all children go through in their early years (typically around the age of 3), the brains of Autistics tend to not be pruned as much as a neurotypical child of the same age. This could account for the sensory processing sensitivities which affect many Autistic individuals.

Researchers have identified a specific form of autism marked by the presence of an excessive amount of synapses in the cerebral cortex. The abnormality may be linked to aberrant mTOR protein activity, a regulator of synapse production.

Italian Institute of Technology, IIT

Studies have found that resting our brains are significantly more active than neurotypical brains. Neuroscience has also shown during MRIs that different parts of our brains are more active during resting when compared to a neurotypical brain.

This means that you might have different sensory processing sensitivities, ways of thinking, and making meaning of your world compared to others. Neurodivergent individuals are more likely to experience co-occurring conditions such as alexithymia, PDA (Pathological Demand Avoidance), RSD (Rejection Sensitivity Dysphoria) poor interoception as well as being at risk for many health conditions.

The Autistic and ADHD Experience Of Trauma

Living as a masked neurodivergent person in a world created by and for neurotypical people can be a life marked with trauma. This is true for acute trauma as a high level of self-abandonment of your needs for the comfort of others and people-pleasing can make you more susceptible to abuse. (Approximately 90% of Autistic and ADHD women report experiencing sexual abuse Frontiers in Behavioral Neuroscience.) However, neurodivergent people experience a high level of developmental trauma.

truama with a small ‘t’ is the constant drip feed of invalidation, misattunement and assumptions of our behaviours

Yael Clark

Need Support? Book A FREE Call HERE

Developmental Trauma Autism and ADHD

Double Empathy And Neurokin

Studies show that neurodivergent people naturally seem to relate to and attract other neurodivergent people into their lives. It is not uncommon for Autistic and ADHDers, after being identified as neurodivergent to discover that their partner and close friends are also neurodivergent.

There are other signs that people on the spectrum connect well with one another. Autistic people report feeling more comfortable with other autistic people than with non-autistic people. Many adolescents with autism prefer to interact with autistic peers over non-autistic ones. And people with autism often build a greater sense of rapport and share more about themselves when conversing with others on the spectrum. One reason for this pattern may be that autistic people are less concerned with typical social norms, such as conversational reciprocity, and so don’t mind as much when these rules are not followed.

RACHEL ZAMZOW  – http://www.spectrumnews.org

Although no neurodivergent person is the same and we have different strengths and challenges we do share similar neurobiology. Like attracts like. When we unconsciously surround ourselves with neurokin (fellow neurodivergent kindred) and we share our experiences but none of us knows that we are neurodivergent we can unintentionally create an echo chamber. (An echo chamber is an environment in which a person encounters only beliefs or opinions that coincide with their own so that their existing views are reinforced and alternative ideas are not considered.)

Instead of seeing ourselves as we are, we believe that everyone sees the world as we do.

We think that everyone around us is experiencing the same level of challenge in their daily life and that we are just doing it wrong. That we are just somehow a ‘failed’ human being.

From my own experience, the normalisation of my AuDHD experience caused me to dismiss my children’s challenges as ‘normal’. This was because their experiences matched my childhood challenges and I did not know that I was neurodivergent. It wasn’t until my daughter’s diagnosis that I realised that our ‘normal’ was different to others.

You May Be Misdiagnosed With Another Mental Health Disorder Instead

Due to the lack of neuro-affirming medical training and the lack of diagnostic criteria, many women or AFAB individuals with Autism and ADHD are often misdiagnosed with anxiety, depression, bipolar or borderline personality disorder.

You could spend years or even decades in the mental health system being treated for conditions that you don’t have.

The medical and mental health sector has spent decades researching how to cure Autism and ADHD and how to modify neurodivergent behaviour. This was done at the expense of research that actually helps neurodivergent people. Very few doctors, counsellors, psychiatrists, psychologists and allied health professionals were educated in the neuro-affirming way to treat neurodivergent individuals.

My experience from my own life as an AuDHDer and a parent of Autistic children is when we take a person’s neurodivergent identity into consideration when we went looking at their well-being it totally changes the outcome for the person.

Tanya Valentin

Autism And ADHD Can Mask Each Other

Another reason why we may not recognise that we are Autistic or have ADHD is that our Autistic and ADHD traits compensate for or mask each other. You can be both Autistic and have ADHD. (The common term for this is AuDHD).

In my lived experience, living in the body of a person who is Autistic and has ADHD is a bit like living with two parts of yourself that want opposite things. It can feel like part of you is Tigger and the other part of you is Eyeore.

For example:

My Autistic self yearns for routine, predictability and sameness. My ADHD self wants to be spontaneous and loves novelty.

Autistic me likes nothing more than spending time by herself. ADHD me wants to go out and socialise.

My Autistic self likes to plan and organise her life. My ADHD self finds daily tasks boring and hard to do. So I procrastinate and do things that I find interesting instead.

Autistic me shuts down when things get too much for her. ADHD me is energetic, and bubbly and verbally processes everything when she feels overwhelmed.

Autism and ADHD are invisible and dynamic disabilities. For me, this is an internal conflict that is not visible from the outside. My brain is a bit like a duck gliding serenely on the surface of the water with its feet frantically peddling under the water. It is exhausting and uses up a lot of my brain power. This is also extremely unpredictable. The parts of myself that are dominant can change depending on what is going on in my environment.

You Are A Pro At Compensatory Behaviours And/ Or Have Amazing Survival Strategies

As a high masking Autistic or ADHDer, you will have intuitively learned many intelligent, resourceful, adaptive ways of coping with life and learning to survive in the world.

If your Autism or ADHD was missed or not understood you could have been ‘labelled’ with other things.

You may have grown up with damaging labels about yourself like ‘lazy’, ‘disorganised’, ‘unreliable’, ‘weird’, ‘too sensitive’, ‘distant’ or ‘unfriendly’.

These internalised labels can become ‘unwanted identities’ that send you into a shame spiral every time you are triggered. This can cause you to overcompensate with the opposite behaviour. Due to the intensity of your feelings and fears that others may reject you, this could mean that you strive for perfection in these areas.

The primary thinking is this, “If I do this thing perfectly then I will be accepted and liked.”

Need Support? Book A FREE Call HERE

Self Identification, Medical Diagnosis and Getting Support

Self-identification is valid and accepted within the Autistic community. It is widely acknowledged that a neurodivergent person knows themselves best and is an authority on themselves.

There are significant barriers that inhibit many neurodivergent people from getting a formal diagnosis. These barriers could include availability, accessibility as well as financial and cultural. You may have personal reasons for wanting or not wanting to go down the formal route. Many online resources are available to you if you would like to research this further for yourself. If you are seeking a formal medical diagnosis, visiting your family doctor is the first step. They will be able to refer you to a psychiatrist or psychologist who can do a formal assessment.

However, depending on where you are in the world, adult diagnosis can be expensive and waiting times can be long. Another point worth raising here is that neuro-affirming medical care is still in its infancy. I have found myself on numerous occasions, when supporting my children, during doctors’ visits being the person who is the most educated on neurodiversity due to my extensive research into this topic.

Learning from the lived experiences of other Autistics, ADHDers and AuDHDers is so valuable and can’t be discounted. You can do this HERE

Self-Authorisation

For all neurodivergent individuals and parents of neurodivergent children and teenagers, the ability to self-authorise and advocate for ourselves and our families is essential. This is extremely challenging considering that most of us learned early in our lives to conform, people please and follow the ‘rules’. Challenging our early programming can feel like a threat to our survival.

The confidence to do this comes from the power of knowledge. Knowledge of neurodiversity in general but also from knowledge of self. As a neurodivergent person (whether you have been officially diagnosed by a medical professional or not) you are already an expert on yourself and your own neurodivergence through your lived experience.

No one knows what it feels like to live in your body.

You do not need anyone’s permission to reconnect with, reclaim or explore your authentic neurodivergent identity and what it means to you. This could be as simple as connecting with other neurodivergent people and listening to others’ lived experiences. It could look like exploring various stims and how they feel to you, or treating yourself with more self-compassion. There is no right or wrong way to do this and there is no rush.

You can give permission to yourself. You can give yourself time, space and grace.

References:

Altogether Autism: https://www.altogetherautism.org.nz/

Neurons With Too Many Synapses Is a Hallmark of Specific Form of Autism: https://neurosciencenews.com/autism-synapses-19557/

Almost 90% of autistic women report experiencing sexual violence, often on multiple occasions: https://blog.frontiersin.org/2022/04/27/frontiers-behavioral-neuroscience-sexual-abuse-women-with-autism-widespread/#:~:text=research%20news%20%7C%20Frontiers-,Almost%2090%25%20of%20autistic%20women%20report%20experiencing,violence%2C%20often%20on%20multiple%20occasions&text=The%20prevalence%20of%20sexual%20abuse,a%20new%20study%20from%20France.

The Autistic Brain: https://www.psycom.net/autism-brain-differences

Double empathy, explained: https://www.spectrumnews.org/news/double-empathy-explained/

Brain network dynamics in high-functioning individuals with autism: https://www.nature.com/articles/ncomms16048


About The Author

Tanya Valentin Neuro-Affirming Family Coach

Tanya Valentin is a Trauma-Informed and Neuro-Affirming Family Coach, NZ Registered Teacher, Lecturer (Te Pukenga – Early Childhood Education and Care), Author and Podcaster.

Tanya is a Neurodivergent person and a proud Mama of 3 Neurodivergent humans. She works to support, educate and foster inclusion, acceptance and positive life outcomes for all neurodivergent children, teenagers and adults in all her areas of life.

Tanya lives with her family in beautiful Northland, New Zealand. She has authored several books and blogs and co-hosts the Seen Heard Accepted Podcast with her family. Tanya is the founder of the Neurodivergent Family Toolbox and the Parenting Neurodivergent Kids Together Community and podcast.

Tanya is committed to making a difference in the world by supporting parents with practical tools and strategies to help them understand their child and their unique wiring, feel confident in their parenting and nurture strong connections between themselves and their children.

Need personalised support for yourself and your family? Book your FREE 30-minute call with Tanya

Tanya

Leave a Reply

Your email address will not be published. Required fields are marked *