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.

Receiving a diagnosis of Autism Spectrum Condition for your child is life-changing. Even if you know, deep down, that there is something “not quite right: with your child, and that something is probably autism, actually hearing a qualified medical professional say the words can take the wind from your sails. For a second or two, the world stops turning. Everything moves in slow motion. The words reverberate around inside your head. Autism Spectrum Condition. Autism. Autistic. My child is autistic.

And then the questions begin. Only by then, there’s no one to ask. You have, more than likely, been diagnosed and dumped. We were given a few leaflets and websites and sent on our merry way, blinking into the rising sun of the dawn of our new lives. We had questions about how this would affect her schooling, how it might hinder her speech development (already delayed, but offered no extra help with it), and who we could speak to if we had any more questions. We never really got the answers to these.

But, the answers I really wanted to know were more personal. How will it affect her future? Will it change us as a family? How will we cope? We’re only around 20 months into our post-diagnosis journey, but if I’d have known then what I know now, it might have just seemed a little less daunting. Here is a list of things I wish I’d known right back at the start…

It will be OK! I would have loved for someone to tell me this in those first few minutes. I probably wouldn’t have believed them at that moment, but to know that it had been said and to be able to pluck it from my memory when needed would have been useful. It can take days, weeks, months and possibly even years to come to terms with a lifelong diagnosis, but for all the ups and downs that will happen, it will be OK. It’s nothing to be scared of. Don’t get me wrong–you will feel scared. You’ve just crested the top of a giant hill and now you’re freewheeling down the other side, unsure if your brakes will work. But, when you stop to think about it, it’s just some words on a piece of paper. Use those words to make yourself stronger. Use those words to get the things your child needs. You will have to fight, there will be times you wonder what on earth is happening, but don’t be scared. Be empowered.

It’s not a magic key. People often say that having a diagnosis is the key to getting support and services for your child. Don’t be fooled. Yes, having those words written on official-looking documentation means that there are more options open to you, but don’t think you won’t have to fight to get these at times. Diagnoses are increasing; funding is decreasing. Service providers are limited in exactly what they can give and several families will be fighting for attention. Waiting times are long, appointments scarce, therapies lacking. You will need to shout, and shout loud.

I’ve learned more about me. I’ve always really admired parents of kids with special needs. I used to think that they were superheroes. And they are. But, guess what? They’re just parents, doing what parents are meant to do. They take care of their kids. They do everything parents of typical kids do, albeit in a different way, more often than not. Feeding might be through a tube rather than on a plate; potty training might come a few years later than the “norm”; the sleepless nights may well continue well past the baby stage (and may never end!); schooling may be at home; socialising might be in special group settings… Some children need constant care, 24/7 and their parents just get on with it, because, well, what else can they do? And I have learnt that I can do this. Even in the times when it feels as though I can’t, I can! I have amazed myself with my resilience at times. I am growing a thicker skin and a louder voice, because we have to make ourselves heard.

She will still grow and change. Yes, some things might be delayed, or maybe not even happen at all, but she will carry on growing and developing, just as other children will. Her personality will develop, she will develop a great sense of humour, she will be loving and affectionate, and stroppy and demanding! Because, guess what? She’s a kid!

I’ll find new friends. Before diagnosis, you might know one or two other people who have a child on the spectrum. At the point of diagnosis, you’ll probably never have felt so alone. But, once you start to emerge from your bewilderment and start looking, there’s a whole other world of people in the same boat out there. I find being sociable quite tricky, but I’ve forced myself to get out and go to some support groups. I’ve found new friends online–and, even though I might never meet them in “real life,” I do consider them friends. I can talk to them about things I can’t with my “real life” friends, because they just get it. I’ve even grown some sort of community of my own through my blog and Facebook page. Other parents ask me for advice! You might need to look for them, but they’re out there–your tribe.

She will always amaze me. I often find myself sitting and watching her, playing, singing, sleeping, and I wonder to myself how we created this amazing little being. Yes, her brain is wired a bit differently, but how cool is that? A very wise person said that these children are the ones that will go on to find the cure for cancer, or the solution to our energy crisis. They will explore our world, our universe, going further than anyone before; they will create technology that will revolutionise the world. The world needs people who think differently, who are different. Even if she never achieves the conventional idea of greatness and success, she will always be amazing to me; just to get through each day with the challenges she faces is awesome.

It’s what makes her, her. I get that some people wish there was a cure for autism. I get that life can be really, really tough, and if only we could take away those difficulties… But, for me, to take away the autism would be to take away my child. For me, autism isn’t something she has, it’s something she is. It’s a part of her. I don’t actually like the term “autism spectrum condition” because it implies it can be eradicated with some cream or some therapy. And I don’t like “disorder,” which implies that there’s something wrong with her. There isn’t. She’s living in a world that isn’t geared towards her; it’s not her that’s wrong! If she was “cured” of her autism, she wouldn’t be her. I love her just as she is.