March Madness is here. Even if you don’t care for college basketball, it’s all over the news. Fun fact: Did you know that this year the odds of the 16th-seeded team winning is 10 million to one? It seems impossible, but the hope still exists. Why else would they even try?

I don’t know about you, but I love a good underdog story. The movie, “Hoosiers,” is one of my favorites. If you are unfamiliar with the film, it’s based on a true story of a rinky-dink Indiana high school basketball team and their washed-up coach. The team and the coach seem like unlikely winners, but the story follows how they start from the bottom and work their way up until they make it to the championship game. I won’t tell you if they win or not. I recommend watching it to see for yourself. Anyway, the point of the movie isn’t about winning or losing; it’s about the struggle and how each of the characters grows in spite of the countless obstacles in their way. For so many reasons, this type of story appeals to me.

As a kid, I struggled to learn and every year in school was a painful uphill battle. My teachers told me countless times that I would never go to college or achieve much in life. Even now, as a successful adult with not one, but two college diplomas, I still carry that feeling of “other” with me.

The fight continued for me when I became a parent of a child with Autism. I know this puts me in good company, because mothers, fathers and grandparents all over the world are sparring with teachers, aides, insurance companies, therapy providers, and mean or even well-meaning people who judge us and our kids. It seems like the war will never end. Once one problem is dealt with, another half dozen pop up in their place.

And so, every year as I celebrate another birthday with my son, I wonder what the future will hold for him. Will he ever be truly accepted for who he is? Will this struggle prove to be too much for him? These and a million other questions plague me daily. Maybe they weigh on you, too.

What worries keep you up at night? How do you cope with the uncertainty? The only thing that seems to help me get through it all is hope. The kind you only find at the bottom rung of the ladder.

My son is a brilliant, thoughtful and artistic child with a lot to offer. He and I talk a lot about his life and how to navigate a world that doesn’t make sense to him. He wants us to write a book together one day when he’s older, so that he can share his experience and how he views the world through the lens of autism. I grab onto these moments and dare to believe that the world will boldly embrace him and his differences.

Because sometimes the underdog does come out on top.

“Why do you want to label your child?” I get asked this question much too often.

I don’t, actually, and I’ll tell you why — I don’t like the term “label” and how it is defined by the people who choose to ask this question. It’s a dig, an insult; like they’re implying I want these “labels” for selfish or unorthodox reasons.

Autism is not a “label.” — My daughter didn’t get a diagnosis so I could make her wear a signboard listing her difficulties.

Attention Deficit Hyperactivity Disorder is not a “label.” — My daughter didn’t get a diagnosis so that I could excuse her behaviors.

Anxiety is not a “label.” — My daughter didn’t get a diagnosis to encourage people to be soft.

I could go on forever, right? Please insert any diagnosis and any theory you may have and then listen carefully. These disorders, disabilities, special needs, extra needs, or whatever other definition you wish to use, aren’t labels, they aren’t excuses, and parents like me whose children have these diagnoses are sick of hearing people call them labels. Professionals do it, friends do it, acquaintances do it without any thought or feeling for how this statement comes across to the people it is aimed at.

It is hurtful, it is judgmental, and it is completely unjustified.

People may say, “Why bother having her labeled when you are doing everything for her anyway?” or “Why do you have to label her when the school are giving the extra support” or “What’s the point in a label? All it will do is hinder her in the future with prospective jobs or relationships.”

Having my child diagnosed (which I sought out and fought for, I might add) wasn’t for my benefit; it was for the benefit of my daughter and the future she rightly deserves. Having a diagnosis enabled her to get access to other services she would not have received otherwise. Having a diagnosis enabled me to help others understand her appropriately and begin to use the correct strategies for her conditions. Having a diagnosis has enabled me to be signposted to the correct support groups, and training courses that I wouldn’t otherwise have been able to access.

These “labels” do not hinder my child’s future — they benefit it. These “labels” are needed for support and understanding. Not having a label will be used against you when you try to get further assessments and referrals. Even though a diagnosis is not legally necessary to obtain support and assessments, you WILL be told it is because funding is critically low and, as a diagnosis is proving more and more difficult to obtain, therein lies the problem of the merry-go-round service.

Have you ever heard a teacher or a person from the local authority say:

“I’m sorry, your child is not diagnosed, so we can’t refer her for this assessment.”

or:

“I’m sorry, but in order to have an educational psychologist assess your child, they need to have a diagnosis of X, Y, and Z first.”

or (and this is my pet peeve):

“I’m sorry, we cannot make an application for your child for an Education, Health and Care Plan, because she doesn’t have a diagnosis.”

This is NOT true!!!!!

But you see, who are we to question these professionals’ rules? On the start of my journey I was told all of these. None of them are true. Nothing is based on a child’s diagnosis, but to access the support and assessments, it seems we need it. Even though this isn’t what it states in the SEN code of practice, it seems that the “label” IS actually necessary.

Please don’t assume that I am labeling my child for any other reason than to help her. Please don’t think that these diagnoses are pointless; they are crucial because they give you the ability to access the correct support, and the referrals and other assessments needed in order to better your child’s situation.

Sometimes in life there isn’t anything that anyone can say to make things better. At times, there isn’t anything that I can say at all. During those times, the tears that roll down my face speak volumes.

Sometimes, tears are the only words that need to be spoken.

My son speaks with tears when he can’t communicate his needs. I watch the tears flow down his precious, rosy checks until they fall completely off his face. And right behind those tears are many more. The tears of anguish, frustration and sorrow flow down that face that I love so much. Within an instant, the tears start to speak from me in answer to his. My tears of empathy, love and hurt glide down my face, too.

No words need to be spoken—just tears—and that is perfectly OK. Sometimes we need a good cry. Sometimes there just aren’t the right words, in any language.

The tears are right there, speaking to me from my son’s eyes when he isn’t included by his peers. His beautiful brown eyes look up at me with the tears welling up and soon they explode out of his eyes. In those moments, he doesn’t need to speak; I know exactly what his tears are telling me. We simply hold each other, crying and expressing our feelings through our tears.

Our tears speak at other times. They are there with us during his meltdowns. They are there when anxiety takes over. The tears pour out during sensory overloads and when he can’t sleep. They are around us, speaking daily, through our struggles with autism. They have become a huge part of our life.

Of course, there are also the tears of loneliness and isolation that come with autism parenting. By all means, the tears of frustration from being judged and from the lack of understanding from others must be added to our list.

Thankfully, we do speak more than just through heartbroken tears. Our spoken words through tears can be very magical and exhilarating at times, too. I often have tears while I am admiring my boy’s small accomplishments. There is nothing better than celebrating our goals with tears of joy. I will never forget the tears the first time I heard my son say my name or the first time he peed in the potty. Some moments just leave us speechless, so the tears speak instead.

There are so many spoken words from the tears that fall in an autism household. Autism parenting, or special needs parenting for that matter, simply comes with its silent moments where tears are the only words that need to be said. There is no shame in admitting it. We all know our children with autism speak that way at times, so by all means, we are allowed to, too!

Throughout the past few years, as I have gone through the most difficult times in my life, I have cried a lot! The saying that big girls don’t cry can be thrown out the window when it comes to special needs parenting because big girls (and boys) can (and do) cry. Sometimes we simply have to relieve the pressure that our eyes feel from a stressful special needs world. Sometimes we just need to speak tears. There are those moments and days when, no matter what words we speak from our mouth, no one would understand, and those are the days that we just speak through our tears.

While you are speaking through your tears, please know that you aren’t the only one. Somewhere in this world, there is another autism parent also speaking through their tears. Somewhere there is another individual with autism speaking through their tears, too. It is a language most of us know.

I thought I would do a series on answering some of the questions that people might want to ask but maybe not know how to ask an Autism parent like myself.  My responses are simply that: My responses! I don’t speak for anyone else and know firsthand that many other parents of children on the spectrum feel very differently and some think the same. Having said that, here we go.

Q. What is Autism?

A. Autism is a very complex, very personal diagnosis that affects every person differently.  There are traits that show up regularly — such as poor social interaction, lack of eye contact, delayed speech, and obsessive behaviour — but these are traits and not criteria for diagnosis. Every diagnosis is different. For instance, my daughter struggles to interact and communicate with the outside world; she lives in her own little bubble and on the whole is pretty content (until it all goes spectacularly wrong!). Other children don’t sleep, at all. Others self-harm, some appear to have nothing ‘wrong’ and only when they collapse in a public meltdown do people see what is going on inside (my son). To put it bluntly, people with autism are wired differently, not necessarily wrong. As long as you work out the ‘glitches’ you can live with it just fine.

Some use the “It’s like being a Mac in a PC world” analogy, which is good for us as I don’t understand Macs at all!

Q. What causes Autism?

A. The short answer is we don’t know. There are theories, hundreds of theories from the MMR shot to low birth weight, probably all the way down to women eating jam during pregnancy. You get the gist — most theories involve pointing fingers at parents. Like many people, I personally think that it’s genetic, as both of my children have degrees of autism and they have cousins on both sides of the family who also have it. They also have a dad with Bi-Polar Disorder, and that is connected quite closely to the spectrum.

Q. Would you want a cure?

A. This is a tough one for me. My children and their Autism are so delicately intertwined that I have no idea where one starts and the other stops. It is not like a tumour, which you can cut away and leave the original child intact (not that I’m comparing ASD to a deadly illness!). I would have no idea who they would be without their quirks, both good and bad. I think a cure sounds quite scary, in all honesty, as it kinds of hints at Hitler’s ethnic cleansing, getting rid of anyone who doesn’t conform. Autistic minds have been moving the world forward for years, creatively and technically. The world would be a worse place without them…however…people with autism have been found to die younger, due to associated health problems and, more scarily, high rates of suicide! The extreme end of autism includes co-morbid mental health diagnoses such as Bipolar, Psychosis, Eating Disorders and more. These can lead to violence towards themselves and others, and I can imagine the people struggling with all this and their parents wish for a cure every day.

It’s a tricky one, everyone is so different.

Q. Do some people use the “Autism” label to detract from bad parenting?

A. Probably, I can’t speak for anyone personally but I am sure there are people who would rather have their child diagnosed the Autism or ADHD than face up to their shortcomings as a parent.  I should probably mention that getting a diagnosis for many people seems near impossible so anyone who actually starts on this route for the wrong reasons need a ‘check up’ themselves.
On the flip-side having a special needs child’s doesn’t mean you can slip into bad parenting techniques and it doesn’t mean that they can’t be naughty. Both of mine regularly do things they know they shouldn’t but the way I deal with them differs to suit their understanding. Autism is a diagnosis not an excuse.

Q. Do Autistic people have a “special gift?”

A. Generally no; being a savant is extremely rare. Autism can often present with a variety of learning disabilities as well as communication difficulties, so asking a parent of these children, “Ooh, are they good at Maths?” may not generate a particularly positive reaction. I personally have two children: one who has severe communication difficulties and is considered at the severe end of the spectrum. She learnt to read at age two by rote and learnt her times tables the same way (clever, yes; savant …p robably not.) I also have a child at the polar opposite end of the spectrum who can talk, interact and, on the whole, doesn’t appear “typically” autistic. He is struggling with the basics of phonics (which isn’t unusual for his age, but it’s clearly not savant).

Q. Will your child grow out of it?

A. No. Hopefully my daughter will grow with it, as will I as a parent and her advocate. If your child grows out of their Autism, I would argue as to whether they had Autism to start with.

Q. Would you be offended if I asked you these questions to your face?

A. No, I’d be offended if you whispered about me and my family to other people. I’ll also be less-than-appreciative if you start telling me about Autism because your ‘sister’s husband’s ex-uncle knew someone with ASD.’ Unless you live with my children day in and day out, you know nothing about their autism.

Some of this might sound harsh or bleak, but it’s not my intention. Knowledge is power, and in order to have real Autism Acceptance we need to be able to have honest conversations. Feel free to comment with any thoughts or questions of your own.