The Mess of Autism

There is a big pile of confusion over Asperger’s, Autism and functioning labels (high and low) that causes many difficulties for parents.

The only clinical difference between Autism and Asperger’s is speech delay around speech milestones, and that does not necessarily mean mutism or selective mutism—it could literally mean partly delayed speech.

The two are inseparable past that point, because they are essentially the same thing. There is no identifiable difference between an adult diagnosed with Asperger’s and an adult with a diagnosis of High-Functioning Autism.

There are myths around Asperger’s that stem from the original decisions by Hans Asperger, who chose to separate the intelligent from the not-so intelligent. (The Nazi government funded and directed him, and that’s a whole other story.)

The High and Low Functioning labels were intended to separate out Autistics with an IQ under 70. Now though, societally functioning labels are used by people and professionals to designate one’s ability to function in society.

It’s rubbish.

All Autistic people are individuals.

We are all different, and function differently on a daily basis.

Autism is Autism. Though certain people have better support structures and coping strategies than others, the underlying Autism is the same. It just affects different people differently, often with a co-morbid condition exacerbating the problem.

The biggest factor for the removal of Asperger’s from the DSM V diagnosis criteria was pressure from the Autistic community. A significant proportion of us see the separate labels and functioning labels as divisive and harmful.

I was at a conference a couple of weeks ago where an Autistic man diagnosed a year ago introduced himself as High Functioning. He then went on to tell his life story, which was the typical tale of depression, isolation, career going well until changes, suicide attempts, burnout, etc.

I spoke next and I asked him why, after all that, he considered himself High Functioning. Clearly, he hadn’t been functioning in society at all. 

He replied: “That’s what I was diagnosed as.”

There is a clear lack of understanding of what Autism is and how society harms us as Autistic people.

There are no separate High Functioning and Low Functioning people. Asperger’s and Autism are indistinguishable from each other, and so are the same. There is no mild Autism, or severe Autism; there is only Autism and the ability of the individual to prevent societal norms from crippling them.

The vagueness of all this, and the misunderstanding and myths around it, just serves to confuse Neurotypicals as well as pre- and newly diagnosed people. It puts a barrier up between all of these groups and already established Autistics.

People complain that Autistic people are hung up on labels when we actually aren’t—we just want them gone.

The full version of this article first appeared here.

What Is the ‘Best Age’ to Get Diagnosed With Autism?

Last month, I accompanied my husband to an appointment where he was finally diagnosed with autism spectrum disorder. He’d had months of assessments to get to this place. What is particularly interesting about my husband’s diagnosis is that he is just weeks away from being 60 years old. 

He lived his whole life having autism and not knowing it, yet always feeling that he was different. 

In contrast, our son was diagnosed at 3 and our daughter, the month before her fifth birthday.

It all got me thinking: What is the best age to be diagnosed if you have autism?

Here are some pros and cons of being diagnosed with autism at different ages.


I would classify my son as just a toddler when he was diagnosed.

The advantages of being diagnosed as a toddler:

  • Access to early intervention, which has been proven to enhance children’s development.
  • May make securing the right schooling later easier.
  • Allows parents the opportunity to “come to terms” with the diagnosis sooner, meaning they are often more positive about their child’s diagnosis.
  • Parents can learn strategies for better parenting a child on the spectrum sooner.
  • Financial support may be secured sooner.

The disadvantages of being diagnosed as a toddler:

  • A child or adult has a lifelong diagnosis “label” that may not adequately explain their current difficulties because they were diagnosed so young.
  • Schooling and education could base a child’s capabilities on what is written in a diagnosis report that is no longer relevant to the growing child. This could limit their opportunities and experiences.
  • Diagnosing too young may increase the chances of an incorrect diagnosis being given, which is damaging and dangerous.
  • Parents may limit their child based on a diagnosis alone.

Pre-School Years

This was when my daughter was diagnosed.

The advantages of being diagnosed as a preschooler:

  • Not yet too late for early intervention, which research has proven to help.
  • Makes securing the right education easier.
  • Gives parents time to learn and understand about autism and adapt any parenting strategies required for the child’s needs.
  • Allows school to prepare better and have adaptions in place for the child starting formal education (if required).
  • Gives everyone a better understanding of the child’s needs.
  • The child will grow up with a better understanding of why they may be “different” than others, which lessens their susceptibility to mental health struggles later in life.
  • Financial support can be secured more easily, if it’s required.

The disadvantages of being diagnosed as a preschooler:

  • Lifelong diagnosis given to a young child who may develop and grow to the point the diagnosis no longer matches their needs.
  • Some challenges with autism do not manifest fully until later, so may have been missed and need reassessing later.
  • The child may be limited by educators or parents based on a diagnosis alone.
  • The child may miss out on opportunities such as mainstream education because they have been “labelled’” as autistic.
  • The child may always see themselves as different from a young age, so they might exclude themselves as a matter of habit.

Primary School Years (Ages 5–12)

This is when the majority of children currently receive their diagnosis.

The advantages of being diagnosed in primary school:

  • Better and clearer understanding of the implications and complications of any diagnosis, so it’s more likely that co-morbid conditions such as ADHD, anxiety or learning difficulties are correctly diagnosed.
  • Education can still be better tailored to suit the strengths and weaknesses of the individual.
  • Diagnosis route is often quicker because there is more professional support.
  • As the child ages, diagnosis will likely better reflect further difficulties the child may face and be more meaningful.
  • The child is likely able to understand (or begin to understand) their own diagnosis, which has proven to be beneficial for their own mental health.
  • Not too late for financial support to be put in place.
  • Still time for parents to gain understanding and adapt parenting techniques as required.

The disadvantages of being diagnosed in primary school:

  • The diagnosis route may be hindered if school does not see any difficulties, but family does.
  • Some children (especially girls) have already learnt to mask and copy, so spotting traits can be more difficult.
  • The child may have to move schools as the extent of their diagnosis means mainstream cannot adequately support them.
  • Children can suddenly feel different than their peers, which can be upsetting for them.
  • As a child ages, it can become far more of a challenge to help them with anxiety or repetitive behaviours because these likely have become a habit over time.
  • Some schools do not support children well, which can lead to bullying.

Teenage Years (13–19)

These are challenging years for most, but even more so for those on the autism spectrum.

The advantages of being diagnosed as a teenager:

  • Teenager may see a diagnosis as liberating, helping to explain who they are.
  • If diagnosed and supported well, it can give some teenagers a reason to be proud of themselves and help them become more self-aware.
  • Parents may find a diagnosis at this stage a relief that the struggles their child may have had were not due to “poor parenting.”
  • Future careers can be planned around the young person’s skills and strengths.
  • Support can be put in place to help socially or educationally, as required.

The disadvantages of being diagnosed as a teenager:

  • Self-esteem can be problematic, as teenagers feel let down and failed by a system that did not pick up on their struggles sooner.
  • Diagnosis is usually discussed at this stage due to a crisis that could have been avoided if diagnosed sooner (mental health issues, violence, self-harming, etc.).
  • By this point, the teenager could be very socially isolated or have an identity crisis that requires extensive support.
  • Securing financial help can be difficult due to the young person’s age.

Adulthood (19+)

As knowledge of autism increases, more and more adults are being diagnosed in their twenties, thirties, forties and beyond.

The advantage of late diagnosis as an adult:

  • Finally understanding and explaining much about their life, bringing a sense of relief.
  • Mental health may improve as the adult finally understands themselves.
  • People may become more tolerant due to the diagnosis.
  • May perhaps be entitled to some financial support depending on severity of diagnosis.

The disadvantages of late diagnosis as an adult:

  • Anger and frustration at not having been diagnosed sooner.
  • May have acquired a long list of previous diagnoses, such as anxiety, depression or eating disorders that could have been greatly improved with an earlier diagnosis of autism.
  • Lack of support may have meant academic underachievement and socially limiting life experiences.

Having all of my family diagnosed with autism has, by far, been a positive experience for my family regardless of what age my children and husband were diagnosed. For us, diagnosis has brought answers, understanding and support, and changed how I parent. It is about grabbing onto the positives and running with them, no matter at what age you get the diagnosis.

There really is no “best age” to get diagnosed because every person is an individual and every circumstance is unique.

If you think your child (no matter what their age) or you, yourself, may be on the autistic spectrum, seek out professional support via a doctor, as it really is never too late to know.

Three, 5 or almost 60… It was the right time for them, and that’s what matters most.

I Have This Thing Called Autism

Fourth-grader George Yionoulis made a video to help his classmates understand “why he does the things he does” because of his autism. The video is a compilation of photos and videos of George through the years, accompanied by a soundtrack of music he created.

“Let me tell you a little about myself. I have fun dancing, I have fun making music, I love to draw and make art, anddddd… wait for it… I have this thing called autism.”

George goes on to explain many of the things he might do in a given situation and why. He also talks about the tools (gum, headphones, focus) that he uses to help himself. The video is a wonderfully clear and honest look at George’s autism (His mom is quick to point out that, “This is just his own experience, and should not be taken as a blanket explanation of autism.”), and he invites his classmates to feel free to always ask him if they have a question about why he does something the way he does.

Although George didn’t talk until he was 3 years old, he’s got a lot to say now, and the video showcases both his talent and his sense of humor.

How Raising an Autistic Child Has Challenged (and Strengthened) My Marriage

This month, my husband and I will celebrate our twentieth wedding anniversary.

Twenty years ago, I wasn’t concerned with the latest autism research, inclusive education or fighting for disability rights. I was worried about my weight.

My wedding dress fit perfectly except for an ugly bulge of belly fat. Three weeks out from W-Day, I started an emergency Slim-Fast diet, replacing meals with eight ounces of pink, strawberry-flavored froth.

By some twist of logic, I persuaded my fiancé to diet with me. It wasn’t fair, I protested, that brides have to starve themselves into Barbie-sized dresses while grooms get to marry in the relative comfort of suit pants. I railed against unrealistic images of feminine beauty, sexual double standards and the objectification of women until he said, “Alright. I’ll do it.”

Every night for three weeks, we power-walked around our Chicago neighborhood, returning to our battered, shoebox-sized apartment. We’d roll out the TV cart, crack open two cans of Slim-Fast and watch countless episodes of Mad About You. We couldn’t wait to be married, simply so we could go back to eating solid food.

Fourteen years later, we were blessed with a son. It was a difficult conception and a near-catastrophic birth, followed by several years of anxiety about his development. By age 2, it was evident to me that our son had challenges and required more help than we alone could give him. My husband disagreed.

For several months, we stayed up most nights arguing. We fought over the inconceivable question of whether or not there was something “wrong” with our child. I maintained that our son’s behavior was out-of-the-ordinary and we needed to intervene now. I cited as evidence the increasing number of “incident slips” being sent home from our son’s preschool and their urging to get him evaluated.

My husband agreed our son could be intense and difficult to manage, but not exceptionally so. Lots of boys act up, he insisted. He wanted to hold off on any kind of evaluation to see if our son’s issues would resolve themselves over time. He didn’t want some doctor mislabeling or meddling with his boy. He accused me of over-reacting; I accused him of denial.

The distance between us grew. In the past, we’d always been on the same team. Whether partaking in a ridiculous diet, facing a family death or undergoing infertility treatments, we’d endured our struggles together. Now, when the stakes were highest, we each felt abandoned by the other.

The turning point came late one night after a prolonged argument. We each lay in bed, staring up at the ceiling in a silent stalemate. We had reached that devastating precipice in a marriage where there is nothing left to say and the future feels uncertain.

Finally, I turned and faced my husband. It was as though I was seeing him for the first time in months. His eyes were red and swollen and his forehead deeply creased. His look devastated me. I saw in it a mirror of the worry and anguish I thought I carried alone. He clearly felt it too. Seeing him so vulnerable stripped me of my own defenses. I began to cry.

“I’m so scared,” I said. “I love him so much. I don’t know what to do.”

“Me too,” he said.

We reached out and held each other tightly.

I can’t say we’ve agreed on everything since. When we do disagree, it’s this place we try to return to: a place of joint tenderness and vulnerability, of being held together by our fears but united in our love for our child. Neither of us would ever accuse the other of not loving our son. We both want what’s best for him even when we disagree on what that is.

I never lost my belly fat. Two kids and 20 years have only added more bulges. Still, I might purchase some Slim-Fast for our twentieth anniversary. We can split a can, watch reruns of Mad About You and remind ourselves of the challenges we have overcome.

The original version of this post was published here.

Staying Positive, Even When Some Days Are Hard

The power of social media and the internet is amazing. Information is at our fingertips whenever we’re ready to access it. Yet, immediately after Joseph was diagnosed with autism, I could not face the plethora of information that was out there. It was simply too overwhelming.

Support groups, online chat forums, literature, workshops. You name it, it was there ready and waiting, but my emotional state at that time couldn’t absorb what I knew was there to help me.

When I did eventually open up, it seemed like everyone knew someone who was autistic and had a story to tell. Although well-meaning, I still didn’t want to hear it.

The reality of autism is there are so many different facets to it. At age 3, I didn’t know where my son would fit; I still don’t know now. I’ve heard countless tales about people with autism who go on to gain a degree, get married, live independently. And whilst these very stories are amazing and give me hope, I know that it is highly unlikely that Joseph will achieve any of these.

Now please don’t mistake me for one of those parents who cannot see any positives and who doesn’t encourage their child to reach for the stars—far from it! And equally, I won’t be told that my son won’t achieve anything, either. It’s just so hard to know what the end game will actually be and this is why I avoided reading too much about autism in those early days.

I didn’t want to be surrounded by negativity and I don’t want to be surrounded by false hope. I needed to feel comfortable with the diagnosis before I could expose myself to those situations.

I recall sitting amongst a group of parents, who talked for two hours about all the issues that were causing them stress. Although I strongly believe in the need to offload now, it wasn’t for me then. I wanted to be surrounded by people who were slightly further down the road, who could tell me: “You know, I absolutely get where you are coming from and that it is shit, but you’ll get through it.”

So, by the time I started my blog, I decided that’s what I wanted to be able to do for other people. I can’t tell you whether your child will be capable of attending a mainstream school or a specialist one. I can’t tell you whether your child will ever sleep through the night or whether they’ll ever use the toilet. But what I can tell you is this: We all have very different experiences, and your parenting style needs to fit with you as a family.

Never assume that your child cannot achieve something, purely because of his or her diagnosis. It may create hurdles along the way, but I truly believe that Joseph may not have had the same successes if I’d had a different attitude.

I once heard a parent say that her child constantly took his coat off in the middle of winter and didn’t feel the cold. She went on to say that she couldn’t tell him to put it on because he had autism—he wouldn’t understand. How did she know that? How did she know that part of it wasn’t him being a typical 4-year-old boy pushing the boundaries?

Truth be told, I never know how much of what Joseph is rebelling against is due to his autism or because he’s a bright young lad who’s trying his luck. If I always said that he couldn’t do something because of his autism, I am certain we would be dealing with a very different child now.

I’ve always had the “can do” attitude and want Joseph to be exposed to as many different situations as he possibly can. I want to push him out of his comfort zone without him falling to pieces, so that he can see and feel more of the world. I access as many mainstream activities and services as possible, but know when to pick my battles and choose something that may be tailored to children with autism.

I’m a strong advocate for inclusion and integrating children with additional needs into mainstream education, with the caveat that they are able to learn, achieve and receive appropriate support. Looking to the future, it is likely that Joseph won’t continue his education within mainstream, and there would have been a time that I would have seen that as a failure on my part.

Now I realise that failing would only be if I put my own needs before his.

How One Mother Connects With Her Autistic Son

Parents of children with autism are all looking for a way into their child’s world. Autism encloses people inside like a turtle shell. But every once in a blue moon, if you’re lucky, you find a way in or they peek outside.

I’m fortunate to have found a window into my son’s world. My son fell in love with reading early on. He’s twice exceptional, which sounds like a positive thing, but if you have a 2e kid, you know that it’s rife with challenges. There’s been one silver lining through it all and that’s been an early love and aptitude for reading.

When my son was three, his preschool teacher told me to not encourage him because he would be bored when he got to Kindergarten. But I ignored her request. Reading calmed him down and made bedtime somewhat manageable.

As a professional writer and an avid reader, I can’t even tell you how much it warms my heart to often find him squirreled away somewhere with his nose stuck in a book. At last I found something to share with him! I joyfully join him in quiet reading time and listen to him give detailed analysis of the books he reads. If he asks for a new book, I get him one without question. Read at the table during dinner? Yes!

Now that my son’s a preteen and wracked with big autism feelings and hormones, reading is still one of my go-tos when it comes to calming him down. Since he reads so far above his grade level, we now also do book club, where we read and discuss novels together. We plan to tackle Harry Potter soon.

The true bliss came this month when he started to write a novel. Just like his mom, he’s in love with storytelling. It’s another way we can connect. His stories are clever and funny. One day he said we are going to write together and be famous co-authors. It’s something I look forward to.

So much of the time, my boy is in his own world—one that I don’t have access to. So when I get a chance to spend time with the child within, I jump at it.

The fact that the two things he loves best are things I love too is just gravy.

A Day in Our Life With Autism

I am a mom with an unusual life. I find myself trying to explain our life with autism to others, and I often get strange looks from people who can’t grasp our life. So what is my autism household like?

Let me explain just a small part of it…

I can’t change our routine. If I do, we pay for it through maladaptive, impulsive, and hyper behavior. I have to be consistent with everything. I can’t change anything—consistency is the key. We live off of routine and consistency, yet we never know what each day will bring. It takes strategic planning to do anything out of the ordinary.

I have to teach my child absolutely everything. Nothing comes naturally; everything has to be taught.

My child eats the same thing for every meal, every single day. He eats the same snack, every single day. He drinks the same drink, every single day. Therefore, I visit the drive-through at McDonald’s, every single day.

We sleep some days and some days we don’t.

We watch the same thing over and over on T.V because it is the only thing he will watch.

There are lots of meltdowns and tantrums. My child has them because he is unable to communicate and has a hard time adapting to an ever-changing world. I have them because I am tired, exhausted, and stressed from autism.

It’s not unusual to find my son on top of my kitchen table, counters, or anything else he can get up high on.

I eat, sleep, and breathe ABA. Oh yes, I speak in a lot of acronyms all the time. I can also tell you what IDEA, IEP, LRE, ST, OT, PT, and AAC are.

I’m sure that every insurance company does not like me because of all the arguments I have to have in order to get my son the medical help he needs.

I am constantly doing paperwork for my son.

I live behind locked doors 24/7 to protect my eloper.

We can’t leave our house without all of our “favorite items” for the day.

My house has a lot of picture schedules, first/then charts, and all the other kind of visual charts that help my child.

We panic without Wi-Fi and it’s not just my child—it’s me, too, because I know what no Wi-Fi can do to our life!

I have a special swing, trampoline, weighted blankets and vest, and all other kinds of sensory items for my son to meet his sensory challenges.

It’s not unusual for him to take numerous baths each day to meet his sensory needs.

My sons live with high anxiety and chronic stress due to their challenges. Therefore, I live with them too, now.

My guard has to be up 24/7 and can never be let down.

We stay home, all the time. He can’t handle all the anxiety and sensory input.

The list could go on and on. Our autism life may be unusual to some, but it has become our normal. I’m not sure I would know what a day feels like without meltdowns, therapy, worry, stress, and everything else that comes along with autism. Sure, I get tired of it all. But in the end, it makes us who we are and at the same time makes this life very interesting.

Autism Isn’t Just for Boys

Autism isn’t just for boys, you know… This is a well-known saying amongst my fellow bloggers that we are continually pushing out there. As a parent of a young girl diagnosed with Autism—with a demand avoidant profile, more specifically known as PDA—I feel that society is letting these girls and women down continuously. Everywhere I look, I see young boys used on posters for autism, or flyers for autism courses. When a national news outlet has bulletins on autism, they choose to interview parents of boys, or male adults themselves.

It is so frustrating that we cannot get our girls into the media to describe their characteristics, to show that Autism isn’t just for boys.

I have personally been bumped by three different news programmes in favor of parents who have male children diagnosed with autism.

We know that some autistic boys rock, we know they like to line up toy cars and spin the wheels, favoring the visual stimuli over the expected imaginative racing games that neurotypical children often choose.

We know that some autistic boys bang their heads, flap their hands and squeal.

Well I have a newsflash for you, and a message to all the people who prefer the cute little boys on their posters, and the parents of boys on their sofas. My little girl, my AUTISTIC little girl, yep, she does all of the above too. And more.

But the most important point to remember here is that some autistic girls have developed strategies to mimic, mask and copy, and they can fool you all into believing they are neurotypical.  People need to broaden their horizons and listen to us—the parents of girls—because Autism isn’t just for boys, you know.

What better way to teach people that Autism is a girl thing too than by making them your poster girls, or the topic of your news bulletins? How are we supposed to support these girls like we do the boys if there is no mainstream information about them? How do we make people see that Autism is a Girl Thing too?

It really upsets me that there is such a stereotypical view of autism, and this really needs to change. Far too many autistic girls are being misunderstood and brushed aside, because they manage to adopt the coping skills necessary to conform to a society that is clearly not yet ready to accept them.

We need to be ready and accepting because these little girls, believe it or not, are growing into young women with depression and eating disorders and multiple suicide attempts.

Isn’t this unacceptable? Do you feel as a part of society that these girls and women deserve a better chance of succeeding? Help them succeed and accept them for who they are instead of ignoring the obvious. Girls have autism, too.

Autism: It Isn’t Always What You Think It Is 

We live in a world where image is everything. We seem to want to SEE much more than we want to read, listen or do. So much so, in fact, that more and more comments on my Facebook page are now animated images in the form of gifs rather than written comments. Pictures say much more than words can at times. 

That’s why I wanted to share this picture of my son.

This is a very typical, everyday image of him. It shows him struggling to do a simple action that others take for granted. It shows him physically struggling to move on from an everyday activity.

My son has great difficulty with transitions. He really struggles to move from one thing, one activity or one place, to another. In the photo, he could not climb out of the car and into the house because something was causing him huge stress. He stayed like this for almost an hour.

It is something people rarely talk about with autism.

When I see pictures of children with autism, there tend to be toys lined up or a child playing on their own or even (much to the upset of some) a child in meltdown. Memes and awareness materials talk of children having meltdowns because there are no chicken nuggets left, or asking shops to turn music down and dim the lights for an “autism friendly” event, and so on. What about the people with autism who can’t get out of the car to get into the fast food restaurant or the supermarket in the first place? 

The latter is much more my reality with autism.

We see people with autism portrayed on television as perhaps adults with fixations who talk about these fixations over and over again, much to the “amusement” of others. Sometimes we may even see autism portrayed as a child being excluded from school for bad behavior, or a family in the newspapers pleading that a certain food should be retained by a manufacturer because it is all that their child will eat. Meanwhile, my son with autism cannot speak a word, has to be carried into his school transport kicking and screaming, and would eat anything put in front of him (including inedible items too!).

The way that autism manifests in each individual is very different. There is no one size fits all. There is no “right” school for everyone with autism, and neither is there really any such thing as true autism-friendly events or clothing ranges. Why? Because what one person with autism hates, another may love. What one person with autism needs may be of no use at all to another person with autism.

So, what is my point? Autism is not what people think it is. There are so many things my son struggles with that people keep telling me “that’s not his autism” simply because it is not THEIR experience of autism. I have been corrected by so many well-meaning people over the years when I state that my son has severe autism and learning difficulties. People will argue with me that the fact he cannot count or read or write is unrelated to his autism. That’s because they have an idea what autism is and my son does not fit into that mould.

Which brings me right back to my photograph.

I live with a child who cannot go from one room in the house to another without screaming. He cannot leave the house without having to have a long list of objects with him, including his iPad. Getting in and out of a bath is a huge issue. Helping to change his pyjamas to clothes and vice versa involves me being attacked and screamed at. Not getting to sit on “his” seat is a disaster that takes weeks to recover from. Having the wrong thing on his breakfast plate is like starting a world war. Someone visiting is a trauma that we can never seem to manage to prepare him for. Unexpected gifts, the doorbell going, the phone ringing…they all cause him hysteria.

Everything is a huge struggle for my son. Dimming lights and turning off music is great for some, but he would never make it out the car anyway so it makes not one difference to my boy. Asking people to be more tolerant of a child in McDonald’s is great too, but I have long since learnt that the drive-through is all we will ever be able to manage.

I am not sure how people could really be more “aware” of people like my son. To be honest, we are housebound most days anyway, so people don’t see our autism.

Which is the reason I took this photo. And the reason that I am writing this.

I guess I just want people to realise that you can have as many autism-friendly Santas at Christmas as you want, but it still won’t help me or my son.

It would take him an hour to get out the house, another hour or more to get out of the car, and an incalculable amount of time before he would even enter a new building, let alone visit Santa.

Don’t stop being aware of others with autism. Don’t stop trying to be more inclusive. Just please remember there are some with autism who struggle with even the very basics in life. There are some with autism who can’t even leave the house. Just because you won’t ever likely see it doesn’t mean my son’s autism doesn’t exist.

How We Hide Our Autism

If you are the parent of an Autistic child, I’m going to introduce you to a concept that’s going to scare the pants off you: Your child is going to grow up to be me.

I am an Autistic adult.

Some people are of the belief that you can grow out of Autism, or that with the right support and interventions, Autism can be cured or lessened. If you’re one of those people, then I’m about to blow your minds with a second concept:

Nobody grows out of Autism and a child cannot be trained out of it. We just get better at hiding it.

Some of us have help hiding our Autistic nature and traits, through ABA or other interventions. Those of us who went undiagnosed learn to do it ourselves. It’s called Masking.

Masking is exactly what it sounds like: We put a mask on—a Neurotypical one.


I notice the music thumping before I even get there.  

I walk up the path and ring the doorbell, hoping nobody will hear, so I can slip away unnoticed. But, of course, they hear.

The door swings open. Light and sound explode outwards in my face, forcing me to take an involuntarily step backwards.

The switch flips, the mask drops down.

“Hey, how are you doing?” I ask as I push in. I can already feel the real me slipping away, the script held firmly in the forefront of my brain.

I shrug off my coat and pass it to the host, remembering to give them a winning smile. I don’t know what I’m going to win with it, but it’s there anyway.  

A shake of the hands, trying not to die internally as my whole body wants to seize up, run away and scream at their touch, fire lancing from my palm, slamming up my arm and setting alarm bells off in my mind.

They gesture down the hall, so down the hall I go. The thumping of the bass is making me bounce on the crumb-littered carpet, the cacophony of voices merging with the shrill Christmas music, blasting out of the speakers. Everywhere is light and bright, the twinkle and sparkle and flash irritating my eyes and making my head spin.

I deposit myself firmly in a corner, clutching a drink handed to me by the host. People talk to me but I’m separate from myself now, helicopter viewing.  

Watching myself mutter and mumble painfully, not even hearing what the other person is saying; Screaming at myself to get out, to just leave, to escape into the silence of the night, the darkness. To get home where it’s safe.

Except I don’t. I can’t. 

 I’m masking and performing.

Happy Christmas.


Those of you that have young children who are fine at school but melt down at home have already witnessed it, as they are the ones who are especially good at it. Conforming at school is masking.

All day we “pretend” that we are NT. We make eye contact, a bit of small talk; we certainly don’t stim or fidget. We contain ourselves and outwardly make it appear that we are everyday people, doing everyday things.

Some of us take off the mask when we get home; those are the ones who melt down when they get home from school and you can’t figure out why.

There’s a reason for that Meltdown though.

If you can, imagine a day at school when you are Autistic: Hundreds of children, bells ringing periodically, people bumping into you, touching you, trying to listen to a teacher but your brain can’t process it quickly enough, the roar of voices, the ticking of clocks, movement everywhere. It’s a complete assault on each of your senses for seven hours a day without a break or let up.

Then you get home and it’s safe and calm, so you take the mask off. Kind of like shaking a fizzy drink bottle all day, then unscrewing the lid. The fizzy drink explodes everywhere.

Some of us don’t take off the mask; we come home and conform there, too. Whether as a child or as an adult, we lock ourselves into our masks. Our parents, our partners, our friends—none of them see the real us, the way we are underneath.

The biggest issue with masking is that a lot of it is conscious. We are aware we are doing it (once you get to later life it becomes a kind of autopilot), so can you imagine what kind of Herculean effort it takes?

Eye contact, social cues, waiting for the right moment to speak, don’t speak too much, don’t spin, don’t flap, hold it in, try to cut out the noise, don’t freak out that someone is touching you, remember your script, don’t say what you think, read between the lines, don’t be so literal, don’t just scream, focus on the conversation, ignore the six million thoughts running through your head at once.

Can you imagine holding all of that in your head while trying to hold a conversation? Or listen to a teacher? Or purchase something from a shop?

It’s utterly exhausting, both physically and mentally.

There are those of us who went undiagnosed; We Are the Expert Maskers. Some of us have been doing it for so long we run it on autopilot.

We’ve compartmentalised our brains so that we’ve cut ourselves off from that part of it. We aren’t aware of it, but the same huge mental process is burning away. Some of us have even convinced ourselves that it isn’t real, that we don’t do it. But it’s always there, that nagging memorandum that we’re able to tap into it at any time and remind ourselves that we are different, we don’t fit in…

For decades, it’s been the undiagnosed that have suffered. Years of masking takes its toll.