Charlie Beswick

Autism and Behavior: Am I Making Allowances or Excuses?

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Harry was born with a very rare craniofacial condition and so, right from the beginning, we knew life would be different for us—both from the one we had imagined and from the lives of our friends.

As Harry is a twin, it was natural for us to compare his development with his brother Oliver’s. However, unlike a lot of parents, it wasn’t the delay that we noticed first.

Harry taught himself his letters and numbers way before Oliver, thanks to his electronic phonics and numbers boards. Although he couldn’t tell you, he would always choose the right answer when you asked him to select a letter or digit. He was fab. He also taught himself how to play the piano from around age 2 1/2. Of course, we know now that the familiar and ever consistent sound made by the same note means that Harry’s autistic mind hears a predictable pattern, whereas Oliver only heard noise. I was so proud!

In time, we came to see the typical signs that would lead us down the road to assessment. Harry rocked and flapped constantly, wouldn’t interact with other children at all, and was obsessive about certain items or toys. He had high scores in each area of the “triad of impairment” and at just age 4, he had his diagnosis of autism.

The diagnosis itself didn’t change anything for us as Harry had already just started at special educational provision, but it did mean that we were more aware of his behaviour and reactions and tried to explain them within the context of his new diagnosis.

Over the past 11 years, Harry has endured some huge operations to correct the shape and formation of his skull and palate. It’s impossible not to make allowances for his negative reactions to the doctors and hospitals, which he has feared, but something struck me lately when I noticed a change in him.

When telling Harry that he was going to the hospital, he used to get extremely upset and nervous. Now, he laughs and replies with “Yay! Vtech toy!” Why? Because we have positively reinforced his experience with a trip to a local toy store after each operation and procedure. We justified it as his treat for being so brave, and although it’s true that he was incredibly brave, we ended up creating another expectation and habit that is now very hard to break.

How many of his quirky autistic habits have been unwittingly created by us? And how much of his behaviour do I make allowances for by explaining it as part of his diagnosis? Here are a few examples to consider:

Harry has phases where he bakes his toys in the oven when I’m not looking.

My explanation: It’s because he’s seen me cooking or has been doing cookery at school and is taking an interest in it himself.

Another possibility: He remembers my scream from the first time and just finds it incredibly entertaining to wind me up.

Harry has started to kick out at the dog for no reason and without warning.

My explanation: He doesn’t like how unpredictable the dog is and he doesn’t like the texture of his fur, so he feels scared when the dog’s around.

Another possibility: He simply doesn’t like the dog!

He has a meltdown.

My explanation: He could be in pain, overtired or experiencing sensory overload where we are at that time.

Another possibility: He’s tired and grumpy and unable to tell me why. He’s had enough of being there or doing what we are doing and wants to go home.

He lashes out at Oliver and hits or punches him sometimes.

My explanation: He’s trying to interact and loves Oliver the most, so he focuses on him sometimes.

Another possibility: He’s just having a moment where he’s feeling particularly mean and is taking it out on his brother (like I did as a child with mine and many other siblings do).

I’m not trying to trivialise these aspects of autism at all, as they are significant challenges for our children and us as parents. But I’m just thinking out loud and I feel that I have as much a responsibility to question my own responses as I do to consider Harry’s actions.

Isn’t it just as feasible that, as well as expressing himself within the restrictions of non-verbal autism, he’s just playing up like any neurotypical child? Where does the autism stop and the child begin? It’s impossible to know.

But when I see him, even in the moments that exhaust and frustrate me, I’m also in awe of him. Of the uncomplicated way he views the world; the way he does what he wants when he wants and is free from how he “should” be feeling or acting; the unconditional love that he gives so beautifully.

So, whether they’re excuses or allowances, I have to wonder: Does it matter? Am I beating myself up and overthinking (just two of my strongest traits) unnecessarily?

Yes, maybe I do make excuses for him when I should be punishing him (that’s not to say I don’t tell him off because I do—he needs to know right from wrong). But I also make allowances for his frustrations and confusion because there are times when, without a doubt, he is responding through his autism. And let’s face it, most of the time I am too busy laughing at his crafty tricks and funny acts to wonder why he’s doing them.

Autism life is fast-paced, full of questions, and peppered with responsibility and big decisions, but never, ever is it dull. And I wouldn’t have it any other way.

Geraldine Renton

On the Days That I Break

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I hear him. I can hear him limping around his room. I can hear him cough. I can hear him randomly shouting words—words he once had, words that mean nothing now.

I check his bedroom camera. I zoom in to see if he can wait the five minutes I need to coax my body into waking up. My back is stiff and sore. My neck creaks.

I am 36, so I am pretty sure I am too young to be feeling so stiff and sore in the morning.

My mind tells my body to get up.

My body refuses.

Today is already one of those days.

The days when I just can’t. The days when it takes so much to stop myself from breaking. I know these days well; I have them often.

I know today will be a day that I will break; a day that I will spend counting down the hours until bedtime.

It’s a horrible feeling. It’s a feeling wrapped in heavy guilt.

My child is terminally ill and I have days when I just can’t do it.

Society tells me to relish every minute with my son, for I know what his future holds. I tell myself the same, but some days it’s hard. It’s hard to take the slaps, punches, pinches and kicks, and still find something to be grateful for.

I know I will feel a huge amount of guilt over feeling this way, especially when I can’t hear him or see him or hold him anymore. I remind myself of this and that is the reason I get up: Guilt is powerful.

Just managing to get by isn’t easy or something any parent wants to do when it comes to their kids. But on the days that I break, it’s all I can do. I push the guilt away and remind myself that I am human.

I get up. I go into his room and I clean him and everything else that requires cleaning. He’s happy to see me, but not for long. He doesn’t like to be cleaned, and the wipes, the cream, are all too alien to him despite us having used them for years now.

I get it done and we begin our day.

He is out of routine.

He expects a bus to come get him, but I know that bus isn’t coming for another three weeks. He doesn’t know or understand this.

I watch the clock as I feed him and medicate him.

He lashes out as I clean his peg site. I don’t dodge the slap in time, which means I have a fresh scrape on my face. More explaining to do when I meet friends or family, and even strangers some days.

Once, a woman very kindly handed me a card when my husband wasn’t looking. It was for an abused women’s home. She presumed my husband was behind my black eye and scraped face. My husband is a big man who is used to getting the evil eye from random strangers when my face cannot be hidden behind makeup.

Some days I break.

I want to run away and not come back. I don’t want to do all the caring. I want to stay in bed and pretend my life is just like yours.

People tell me that at least I don’t have the future worry of what will happen to Ethan once I am gone. They are right—I don’t have that worry.

I worry about what will happen to us when my son is no longer here. How will that feel? Will I be able to look at myself in the mirror then, knowing that there were days when I wanted to run away from everything, including him?

For me, autism is very different from the shows we see on TV. For me, disabilities are very different from the shows we see on TV.

Our life with Autism is violent.

Our life with disability is heartbreakingly painful, as we watch our son lose each and every skill he ever had.

So, yes, I have days when I break. Days when the world I live in is too much for me. Days when I want to run. Days when I wish for a different life and days when I am angry at the life I have.

Am I ungrateful? I don’t know.

Are there worse situations out there? I am sure there are, but that doesn’t make my situation any easier.

I think society puts us parents on a pedestal by saying things like “I couldn’t do it” or “I don’t know how you do it.” The truth of it is, as well-intentioned as those types of comments are, they often make me personally feel like I am not doing it. Because there are days when I break, days when I just can’t, and days when the only thing that gets me up is guilt.

I think that the only way parents like me can change this view is to be honest, be open, and admit there are days when we just break.

And it’s OK.

It’s OK to feel like running away.

And it is OK to tell society the harsh truth about being a parent to a child with a life-limiting condition or autism or Down syndrome or any other disabilities or challenges.

Melissa Cote

My Child Is Different, and So Am I

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My child is amazing—truly freaking amazing. She is everything that I want to be. 

 When I’m tired and I think that I can’t possibly push through even one more day, I look at her progress and I force myself to push on through. On days when I feel like I can’t even get out of my own bed because of depression, Zoey mentally pulls me out. I struggle with major depressive disorder, anxiety, panic disorder, complex PTSD, and fibromyalgia, but I can’t just stay in bed—I’m a mom! 

One day in August, three years ago, my husband and I drove two hours away to have a specialist confirm what we had already suspected…autism had chosen our child.

Getting any kind of diagnosis is a shock and nothing prepares you for it. If you think you are prepared, well that preparation crumbles in the wake of a specialist looking at you and telling you that there’s something wrong. 

When it comes to your child, the last thing you want to hear is that there is something wrong. You don’t want to be handed pamphlets and told to find a support group. They looked at us and asked us, “Do you understand what we just went over with you?” We shook our heads “yes,” but we were obviously in shock, because we couldn’t possibly understand what we were in for. 

We were then escorted out the door and shown where to get the elevator. In that elevator, I looked up at my husband, who was holding onto our almost two-year-old daughter, and I asked him: “What do we do? What happens now?”

He replied, “It changes nothing. She’s still our happy child.” 

I tried to accept that and believe him as he said it to me, but the diagnosis did change everything for me. I stayed up every night researching, blaming myself, even blaming my own illnesses, what had I done wrong. I cried, sobbed, grieved. I got angry, and I spiraled into another bout of major depression—one of many in my life. 

These emotions of sadness, fear, and anger, well, they lasted for more than a year for me. Even on the days that I had thought I had settled with those emotions, they came back looking for more from me. It was a vicious, emotional cycle of tug of war that I was really tired of fighting, and I realized that I needed help.

So, I started seeing a therapist. Soon I stopped fighting those emotions and instead released them. I stopped blaming autism for choosing my child and I stopped the love/hate relationship that I unknowingly had with autism. 

I realized I was discriminating against autism—not my child, but her autism. I was treating autism wrong and making it into something scary… Why, because autism is different? I’m different; we are all different. 

What’s more, I learned that by talking about my daughter’s autism, it made it feel okay for me to talk about my mental illnesses. I realized different can be scary and we can be afraid of the unknown, but everything and everyone deserves a chance to show you just how beautiful different can be. I tell my children that just because someone or something is different, “Different isn’t bad.”

Zoey’s autism saved my life! I know it sounds silly, but it’s true… Autism saved MY life. 

If not for Zoey’s autism, I never would have woken up and embraced my own illnesses. I wouldn’t be the mom I am today; not just for my kids, but as a person. I became Zoey’s voice when she had none, her advocate when she needed one, and always her mommy who loves her. 

In being Zoey’s voice, I found my own voice. In helping to fight for Zoey’s needs, I learned to fight for my own needs. Getting Zoey’s autism diagnosis helped me understand my own diagnoses. Something inside me woke up and I realized autism doesn’t discriminate and that no one should discriminate. By talking and sharing, maybe we can end the stigma surrounding “differences.”

Angela Conrad

A Letter to the World About My Autistic Son

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Dear World,

Have you ever been so excited about something and you never thought the day would come?

All I ever wanted to be in life was a wife and mother. I couldn’t wait to have babies. Needless to say, I was stoked when I found out I was pregnant with my now seven-year-old little boy.

Truth be told, he is one amazing little guy. Let me tell you a little about him.

Did you know that he could spell words by the age of 2 ½?! Amazing!

He has a smile that can brighten anyone’s day. I love the way he smiles and claps when he watches “Elmo’s World” and “Baby Einstein.” He watches the same exact parts of his favorite episodes over and over daily.  The. Same. Exact. Parts. That is no exaggeration!

When he does something good and is praised, he is on Cloud Nine and claps to his own happy noises! He loves it when he makes his mom happy.

He doesn’t communicate like you and I do. Communication is actually very hard for him. For years he cried and had meltdown after meltdown because he could not communicate. Now, he has an AAC device and we are slowly learning on it.

He has an amazing sense of the world around him. He doesn’t act like he is paying attention, but he is. He may not look at you, but he knows what you are doing.

He has a photographic memory and rarely forgets anything. In many ways he is smarter than the average seven-year-old.

He tells me he loves me in several different ways without words because he can’t speak the words. How do I know he loves me? Well, he touches my hand and pats me. He smiles when I pick him up from school and therapy. He has this amazing “happy” noise that flows out of his mouth and I melt every time I hear it.

He speaks to me through his eyes as well. He rarely makes eye contact with me, but when he does, he speaks volumes. No one else would ever understand this type of language and bond.  It is quite amazing to experience, so don’t be jealous!

He has the most amazing ability to run effortlessly. It’s a dangerous talent and leads to elopement and wandering. However, when I get him in our backyard, he can run for hours on end and never gets out of breath. He loves to run and move. He needs it, truth be told, and we make sure it is coordinated into his daily schedule and routine.

Oh yes, the trampoline. He jumps for hours on end—seriously!

I have never seen a kid love McDonald’s chicken nuggets as much as he does. Chicken nuggets, pizza, and fruit rollups are a few of his favorite (and only) food items. He eats them for breakfast, lunch, and dinner.

My son is an astonishing little boy. He sure makes life interesting. He didn’t sleep for years and only recently has become able to manage all the sensory input from stores and restaurants. His mind and body are fascinating.

He may be a little different than your child or anyone that you know that’s his age. When I became his mother, our life changed and it changed dramatically. In-between all the quirks and chaos of our life, he battles the effects of severe autism daily. We have shed countless tears and gone through much heartache together. I could preach for days on his challenges.

But, instead, I wanted you to know about the amazing little boy that he is and how much joy and sunshine he has brought to my life and the lives of everyone that knows him. He doesn’t let autism define him; instead, he shows the world how awesome autism can be.

Tina Medlock

The Dreams I Learned to Let Go

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Even before my son, Joseph, was born, I had made a handful of plans as to what he would be. He would be funny, smart, almost certainly athletic, and he would undoubtedly have a successful job.

The day of his autism diagnosis at age 3, those plans were wrenched away from me with just the mention of the one word.

Autistic.

He was non-verbal and still not toilet-trained. How would he ever achieve anything? He was autistic. I plunged into a depression where I just couldn’t see the tunnel, let alone the light at the end of it.

Autistic meant that he would be unable to succeed. Life would be full of challenges that would be difficult to overcome. Who would love my son? How would he ever learn anything when he barely understood anything?

Although I knew that autism was a spectrum disorder, I hadn’t quite realised how wide that spectrum was. I had only read about two extremes: people who were non-verbal and had issues accessing the world around them and people who were high-functioning and could articulate their difficulties, go on to form relationships, and secure employment. Joseph appeared to fit in between those extremes, which in some respects made the future seem so much more uncertain.

There wasn’t a lightbulb moment when those feelings changed for me—it was a gradual process. His communication developed and he eventually started using the toilet. He began hitting some milestones, albeit later than his peers, but he still hit them. I heard stories of people who were non-verbal and still became scholars with university degrees and I became hopeful. I was frightened of setting expectations too high, but I decided that I would give Joseph all of the opportunities he needed to succeed.

I realised that success is not necessarily measured through exam qualifications, but through more subtle achievements. We celebrated a successful shopping trip. We high-fived when he walked out with confidence in front of the whole school and participated in a dance with the rest of his class. We cry with joy when he initiates a conversation and doesn’t just imitate spoken words.

I still don’t know whether he will find love within a relationship. I have no idea whether he will remain within a mainstream school environment or be capable of living independently. What I do know is I will look back and have no regrets about the opportunities I provided him with. As a parent, my difficulty lies in trying to predict the future and determine the end game. But, after all, nobody can ever know that.

Your child being autistic doesn’t mean you can’t have dreams—it just may take some readjustment of your expectations. We still set the bar high for Joseph and encourage him to reach for the top, and he will always have our constant support along the way.

I believe in him and I believe in my ability to be the advocate he needs.

Jodie Eaton

How a Dog Made Our Future More Hopeful

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I often wonder what it would be like to have just a peek inside the mind of my eight-year-old autistic daughter. I wonder if I could catch just a glimpse of her difficulties—how she struggles to understand and communicate—and then I could find a way to help her be less confused, less frustrated. Just to see things through her eyes for a moment, to work out how those cogs work and which bits need to be oiled, to ensure they’re working smoothly.

I AM allowed into her world. She regularly welcomes me with open arms on her terms, but I am just copying her and feel like a fraud. I still don’t fully understand how all those pieces work together. I am well and truly winging it.

Many different clinicians, including a speech and language therapist, an occupational therapist, a psychologist, and a pediatrician have assessed Lola and told me her difficulties, but none of them have offered any direct help. None of them have attempted to help me put the pieces together or told me which bits need oiling and which to leave well alone. Lola has NEVER received any therapy.

I have asked for therapy sessions, including music, play, and animal therapy, but each request has been denied. Her anxiety is so severe that she needs more than the little I could provide for her. Even at her special school, she doesn’t have any therapy sessions in her timetable to specifically help reduce her anxiety.

I knew I had to do something, and so I started researching. If you are a parent who has an autistic child you know that I don’t use the term “researching” loosely. I wanted to get a therapy dog for Lola, but it wasn’t that easy. Most places I came across charged £9-10K, which is way out of our price range.

I was looking for a breed that was intelligent but calm, not too big, only needed small amounts of exercise and would be easily trained. Finally settling on a Cavapoo (King Charles Cavalier crossed with Toy Poodle), I searched for reputable breeders and looked at Google images to see what the dog would look like. I wasn’t having much luck in the beginning; I didn’t quite take to any of them right away. I started having second thoughts about whether we’d be able to have the time for a puppy and Lola’s needs.

My head was telling me not to go ahead with this plan, but my heart was winning the battle. After finally persuading my partner that this would be amazing for all of us, I Googled one last time and found the most adorable little red Cavapoo I had ever seen. That was it. It was literally love at first sight. Two days later I had left a deposit without even seeing her, and a week later I was introducing Callie to Lola.

I knew Lola wouldn’t pay any interest at first and I was right. She hid behind the sofa, processing the new information in her own time. When she was finally ready, she came and said “hello.”

Callie has been with us for three weeks now. Lola absolutely adores her and it is clearly reciprocated. Just today, when I picked Lola up from her summer camp, I belted Callie in and she came with us. As soon as she heard Lola’s voice, she literally couldn’t contain herself—she was jumping and crying to get to her in the car.

Watching this friendship blossom has been absolutely beautiful. Lola has been training Callie to use her toilet mat, and has been caring for her, feeding her, brushing her. She waits with her and gets her treats ready, asks her to sit and gives her lots of praise. Lola is embracing this new chapter with such enthusiasm and zest that it really is astounding.

Overall, Lola has been so much calmer than she was before. In the three weeks that Callie has been here, Lola has only had one serious meltdown.

Lola’s biggest challenge in life is transitions, and Callie has helped with that immensely. When Lola walks from room to room, gets her shoes on, brushes her teeth, gets in the car—Callie is there. Like a little living mascot, she provides courage and distraction to a little girl who would normally scream for 10 minutes because I’d asked her to put her shoes on. She has brought joy and peace to our family, and I am so glad that I listened to my heart and not my head!

I am hoping that we can have Callie trained to become a fully fledged service dog. That would enable us to transfer Lola’s newfound skills from inside to outside the house and maybe have some fun days out, a meal or a cinema trip. Dare I dream about taking her clothes shopping?

A year ago, I would have laughed at that suggestion. Now? Thanks to one little puppy, our future is hopeful, and my faith has been restored.

Rachel L. MacAulay

Lidl Trials Autism-Friendly ‘Quiet Evenings’

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A few Lidl supermarkets have joined the burgeoning movement of stores (and some game places, such as Chuck E. Cheese) adding an “autism-friendly” shopping time to their weekly or monthly schedules.

This newest addition to the growing list of these initiatives by shopping chains such as Tesco, Toys ‘R’ Us and Target, is worth noting because of the time its shopping hour will take place (as well as its duration). While many autistic adults and parents of autistic children have complained because the “typical” hour set aside for their exclusive shopping is in the early morning, Lidl shops in Ireland have announced that their autism-friendly shopping time—billed as autism-friendly “quiet evenings”—will occur from 6:00 to 8:00 p.m.

“My son is not keen on going to the shops as it is,” explains Louise Ireland, a mother of three whose eldest is on the autism spectrum. “As an autism mum, I would love to see evening times (or times not so early in the morning), as they’re just more suitable to our chaotic schedule.”

Lidl will be trialing these shopping evenings in their Pottery Road (Dublin), Carrickmacross (Monaghan), and Patrick Street (Westmeath) locations on Tuesdays through the month of August. As is typical, lighting will be dimmed, music will be turned off, no store announcements will be made, and extra staff will be available for assistance. Additionally, shoppers with an Irish Autism Action ID can skip to the front of the checkout line (those without it will also receive help if needed). Lidl has also created this map to help kids get familiar—and comfortable—with the store.

If the chain gets good feedback from customers, it may roll the program out to the rest of its Ireland stores and make it a permanent occurrence. It will be interesting to see whether their chosen evening hours may be at a time truly more friendly to those who need it.

Angela Conrad

Three Things I Am Tired of Explaining About Autism

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Not again, I thought to myself. 

Did they just really ask me this? Here I go again, I said to myself with a plastered smile on my face, trying to hide how cranky their comments made me. I know exactly why they ask such questions or say the kind of comments that they do. It’s simply because they can’t understand my child’s behavior and why we do the things that we do.

Being an advocate can be very monotonous. At times, I feel like I explain the same things repeatedly. And even after I go into great detail, I get the same baffled looks. It leaves me exhausted, irritated, stressed and angry. It’s exhausting having to repeatedly explain your child to people. I often leave a situation all calm and collected, and then release my built-up frustrations later. After all, a person can only explain something so many times without getting a little grumpy.

Are you wondering what I get asked about my son’s behaviors? My list is somewhat lengthy, but here are the top three things that I am tired of explaining.

1. Every child with autism is different.

There is not one family who has the same journey. So, please stop making comparisons among children with autism. I often find myself in a conversation and the person will say something like, “Well, I knew a woman who had a nephew with autism and he just started talking when he was four. So, your son will too.” Or something like, “A kid who has autism and lives across the street from me was put on a special diet by his parents and now he is just fine. I bet if you try that, Trenton will be too.”

UGH! Nothing can be more frustrating than trying to explain to people that what works for one child/adult with autism will not necessarily work for everyone. When I explain that I tried what they just mentioned and it didn’t help my son, I get the most confused/blank look back.

“How can that be?”

“It’s just autism,” I say, and I leave it at that.

Inside, I am screaming and angry and feel judged. I often feel like they don’t believe me when I say that I have tried and done almost everything, but my son isn’t like the person they know. It’s autism, folks! No one is the same and not one story is the same!

2. Yes, he does look ‘normal.’ Looks aren’t everything.

I know, I know! I hear this one a lot. My child is handsome and adorable, and has the cutest smile in the world. Therefore, he looks “normal” to strangers—it appears that there is absolutely nothing different about him. However, don’t let his looks dictate to you whether he has challenges.

He has many mountains to climb daily, and always will. My life has been forever changed because of his challenges. He may look like the boy next door, but we definitely walk to the beat of our own drum in this house, and we always will.

3. He’s got sensory issues.

Trying to explain the sensory problems that accompany my son’s autism is one of the hardest things to do. “Oh, your son can’t brush his teeth? But, why?” People look at me, expressionless, trying to grasp how a child who looks “normal” can’t brush his teeth because of sensory problems. I always go further, too, explaining that nail trimming and haircuts are impossible unless my son is asleep or held down. The look on their faces when they hear that is priceless!

It is hard to manage not only these types of conversations about autism, but many others as well. I do my best to get through them pleasantly while I am dying a little on the inside. Just when I think that I won’t have to engage in another tedious conversation explaining my son to someone, I find myself right back in the same exact conversation, but with a different person. It’s exhausting.

Miriam Gwynne

The Reasons I Don’t Like to Eat

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We asked Naomi, the autistic daughter of blogger Miriam Gwynne, to try to write something for our community that would explain why she doesn’t always like to eat, and what causes her to not like certain foods. These are her words:

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Sometimes bedtime is the best time. It is the one time people leave me alone. They stop asking things like “Are you hungry, Naomi?”, “Would you like a drink, Naomi?”, “Are you sure you don’t want a snack?”

Why do people eat and drink so much, anyway? I have things I prefer doing, like watching YouTube and playing my own games with my toys. How am I meant to eat or drink when I am doing something else?

Sometimes people even want me to change rooms to eat. School does that. Why? I am comfortable and happy and then they make me move and my brain is thinking about where am I going, did I leave anything I might need, what if things have changed when I get back? What if someone touches something?

Those things scare me.

You want me to move to some place, sit down, and eat what you have made. But I didn’t ask for it. I did not know it was happening. No one told me I would smell different things, hear different voices and touch different stuff, and now you even want me to taste things?

It is too much, so I just freeze.

I can hear you, but everything is fuzzy.

I am so scared. I am scared that people are looking at me. I am scared everyone is going to talk to me. I feel sick.

Why do people eat funny things? People eat things with bright colours and I can’t understand that. My body is a pinky beige colour. That is a safe colour, like a light brown sort of colour. If my skin is OK then things that colour are OK, too.

But do you want to know why I still sometimes don’t eat things that are my skin colour? Well, it is just wrong. And my brain is all upset about food. When I play with my toys, they look the same, they stay the same and they act the same. Sometimes I eat something and it tastes nice; it is the right colour and it feels nice and soft in my mouth.

But then some days I eat what you tell me is the same and it isn’t the same. It is not the way I saw it the time I liked it. It does not have the same softness, and I get upset. You ruined it. Why do people do that?

I order my toys in lines so when I look at them they look the same. I feel safe like that. But you don’t let me do that with food. If I put it in order, it makes sense. I want to know it is “right” and I need to check it. What if it is wrong and it goes inside me? That would hurt me.

That is why I have to have one thing, then another. My brain tells me “this is nugget skins” and I remember what they taste like. You damage it if it has sauce or potatoes on it. Then it is not nugget skins, but some weird thing my brain does not know. So, all nuggets are dangerous. And I get scared again.

I like soft. When I chew sometimes, I get a little tiny bit to swallow, and sometime a bigger bit. That means it tastes different and it does not make sense. Nibbling is safer. My teeth don’t want to touch stuff because then it tastes like teeth, not what it should taste like. Teeth is not a nice flavour. You know that because no one makes anything teeth flavor, do they?

I feel sick sometimes. Mummy says it is hunger, but I don’t get it. My tummy makes me feel sick and people say it needs food, but it already wants to get rid of what is in there so why add more? That does not make sense to me.

I don’t think people like me sometimes. They shout at me and keep making me eat. I get scared and sad: Please leave me alone. I like it best when mummy puts things I like near me when I am playing, so my toys can look at it and tell me it is OK. I know my world is OK then.

All day long people eat, eat, eat. And I get scared, scared, and more scared. I eat at breakfast and then you want me to eat again for lunch or snack at school, then dinner, then supper.

I want it to end some days. That’s why bedtime is the best for me.

Mummy asked me if I dream about food when I sleep. No way! I dream about trains. Thomas the Tank Engine is brilliant. He never eats, and I like that.

Miriam Gwynne

Five Things Only an Autism Parent Would Understand

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There is a famous quote by C.S. Lewis that says, “Friendship is born at that moment when one person says to another, ‘What! You too? I thought I was the only one.’”

As a parent to two children with autism, I often think I am alone, struggling with things that I think nobody else would understand. And then I meet another autism parent, and another, and it seems we have so much in common.

Here are five things I have found that every autism parent understands whether your child can speak or not, whether they have learning difficulties or not, whether they are now adults or still in nappies. If you know these five things, know this too: You are not alone!

1. The Look

You know the ones where every eye is on you and your child because they are acting differently? Whether they are flapping, spinning, screaming, humming, rolling on the floor, or running away, autism parents know that look well. The look of judgment, curiosity, condemnation and contempt. Sometimes, it is a solitary look; other times it is all-consuming and you can feel their eyes staring right through you.

We are raising unique, smart, wonderful children that are too often misunderstood. Hold your head high, autism parents, and keep walking. It’s stressful, but it gets easier!

2. The Exhaustion

Even if you are blessed with a child who sleeps (which isn’t that common with autism), we all know the exhaustion. The appointments, the therapies and the constant need to interpret the world on your child’s behalf takes it out of you. Exhaustion causes so many of us to struggle with health problems—both physical and mental—and forget the most basic of things. Sleep deprivation and stress can make the most intelligent autism parent forget how to spell the simplest of words on a vital form. Be kind to yourself. You are raising an energetic and spirited child who will change the world; but right now they’re zapping your energy. We have all been there!

3. The Fight

I have yet to meet a parent who has had their child diagnosed quickly and easily, had every service they require to make their child the best they can be given freely and plentifully, or had full support in education from Day 1. Maybe there are some out there, but it is rare to find.

From the moment we suspect our children are struggling, we enter a fight: a fight for therapy, a fight to be listened to, a fight for the best education for our children. We fill in forms just to have things declined by people who have never met our child and, as if this was not bad enough, we then have to fight a society that still views autism as “Naughty Child Syndrome” or “made up.” If we complain, we are seen as troublemakers; if we call too often, we are pushy; and if we write about our children on social media, we are either over-sharing or attention-seeking! It makes no difference what age your child is or what ability they have, one thing I have found in common is the fact we all seem to have to fight at some point.

Can I tell you something parents? Our children are worth it. Keep fighting.

4. The Constant Vigilance

When you have a child or adult who struggles with communication, be they verbal or not, it is a guarantee they will need more support and supervision than others. When your child has no awareness of danger and is vulnerable, you have to be always vigilant. Even when they are out at school or with carers, that vigilance never eases. We have to be aware of where they are and who they are with always because we have children and adults who are easily confused and anxious.

We have to think about dangers long before they appear, like water, roads, open doors, sudden noise and objects they may eat. We live with a heightened level of anxiety and awareness that other parents often misinterpret as overindulgence or being hyper-protective.

It’s hard, I know that, but you can do this!

5. The Worry

The worry is always there. Worry about change and how it will affect them; worry about political issues that could affect future benefits; worry about what will happen when we die; worry about whether they will ever be accepted and understood. Before they start their education, we worry about teachers and friends, and then as they get older, we worry about jobs and relationships.

Yes, all parents worry about their children, but we have so much more to think about. Nothing is taken for granted when your child has autism. Friendships are confusing and stressful, language is a mystery, and repetitive movements are misunderstood and mocked. We are raising babies the world finds fascinating yet exposed, interesting yet misunderstood.

We have reason to worry. Yet, we also have reason to be at peace. There are teachers who will care, assistants who will go that extra mile and employers who are ethical.

Stay positive. Together, we can help make the world a better place for all our children. 

Have you been there? Do you know the looks, the exhaustion, the fight, the vigilance and the worry? Welcome to the wonderful world of autism parenting. It’s hard, but well worth it. And it’s great to find others who understand.