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.

I never knew about sensory issues before having Brody. I wouldn’t have believed that a child could get so upset at the sight, touch, smell or sound of something — if that something wasn’t typically upsetting.

Brody’s sensory issues were visible before we even knew what they were. When he was weaning as a baby, he would often gag at the sight of food to the point he would vomit and refuse to eat. When we went to play groups, he would retch when he saw other children eat grapes and bananas. When I gave him cooked coloured spaghetti to play with, he looked at me in sheer horror, repulsed. He threw up at soft play once after touching stringy sensory lights and on one occasion was sick touching wet washing that had come out of our washing machine.

It sounds so silly, but I used to put it all down to reflux. Because his doctor put pretty much everything down to reflux back then — his delays and his daily vomiting.

It was only as time moved on — when we realised that Brody had various disabilities and I had the opportunity to meet more doctors, therapists and mums walking similar paths—  that I discovered sensory issues was a thing. And that it was known to many as sensory processing disorder (SPD).

Apart from the fact that it upsets my beautiful boy, the thing that really frustrates me with SPD is its unpredictability. There is no consistency, so I can never call it.

SPD can make me out to be a total liar to those who don’t understand its ways, which, let’s face it, is most people. One day, Brody won’t eat something. He’ll recoil at the touch of it and push it away, starting to gag. A few days later, someone will offer him the exact same thing. It could be a banana, a chocolate biscuit — anything. I’ll explain the situation to them and then he’ll quite easily take it from their hand, have a bite and treat it like it’s the nicest thing he’s ever tasted.

SPD can make simple things at home a nightmare. Some days I can vacuum our living room whilst Brody sits on the sofa and he doesn’t even flinch. Other days he screams as soon as it’s turned on and throws the nearest object in protest — usually towards me. If someone in another room uses the handheld vacuum, you need to be really careful that he doesn’t hurt himself or someone nearby as soon as he hears it. Needless to say, we usually try to just vacuum when he isn’t in the house.

SPD can let its presence be known anywhere. Sometimes we can put petrol in the car and it is no big deal. We’re just like any other family filling the car up. Other days, just turning into the petrol station, knowing that that the noise of the tank being filled is coming, is enough to make Brody screech and cry — and believe me, he rarely cries.

SPD can make our favourite places hard to enjoy. Like our garden, which is the one place where we can just go outside that is safe and accessible for Brody. But sadly, his sensory issues mean that we never know how he’ll react when we step out the back door. It could be the sound of a lawnmower a few houses down, the wind or something like the touch of the sand in the sandpit. When he was a toddler he used to gag when his bare feet touched the grass. Thankfully, that one stopped, as it was as tricky as it sounds!

SPD can ruin family days out for Brody. We can be eating in a restaurant where he’ll suddenly gag because of the food we’re eating, so we need to leave. Or he can be enjoying soft play and someone turns on a coffee machine in the background and he is instantly distressed.

Don’t even get me started on hand dryers in public bathrooms.

SPD is hard on everybody, but especially Brody. I can’t even begin to imagine how hard it must be for him. Because he is non-verbal with a learning disability as well as autism, sometimes we just can’t guess what it is that is upsetting him. And that’s so tough for us all.

Over the years, some of the things he has struggled with because of SPD have improved somewhat. He never used to be able to tolerate sitting and eating with other children at all before he went to nursery. Now he sits with children every day and manages so much better. He will still gag occasionally, but it’s hard to know if it’s because of sensory issues or because it’s his way of saying “no.” Nursery has helped him so much.

One thing that is almost always consistent, though, is that a cough and cold brings it tenfold. Being unwell rarely doesn’t affect him when it comes to the sight and touch of even his favourite foods.

We’ve learnt to accept that we can’t predict sensory overloads. That some days everything will be fine, and other days things will be more difficult. But I don’t know if its unpredictability will ever not be frustrating for us — especially Brody. Because, naturally, we just want him to be happy and enjoy simple things. And SPD has the power to prevent that.

It’s uncontrollable.

No one has a child hoping that they will have problems and difficulties in life – that would be absurd.

We want our kids to fit in with their peers, have friends, enjoy their childhoods and do well at school, but sometimes life doesn’t dish up exactly what we were expecting.

Seeing your kid on the edge of things struggling to join in is a painful experience, as any of us who have been in that position can testify.

When Edward was first diagnosed as having Asperger’s Syndrome it didn’t come as a surprise to me as I had suspected that he was on the spectrum on and off for quite a number of years. It was more of a shock for Nick, and I remember him asking the psychologist who gave us the diagnosis for a percentage score of how autistic Edward actually was. The conversation went into a strange loop, with the psychologist unable to give a precise figure and Nick struggling to get a handle on the situation without some tangible score.

When we got home, we contacted both sets of our parents and let them know. Then we had to work out who else to tell and in which order. Edward was 8 years old at the time and it seemed only appropriate that, seeing as he was old enough to understand, he should know about his diagnosis before anyone else. So we sat him down and told him.

I’ve written about how we did this and how Edward reacted here.

Nick and I both agreed that school staff needed to know. After that it became more tricky. We wanted to tell our friends but were aware that, if we did so, some of them would inevitably mention it to their own children. We wanted Edward to be settled with his diagnosis before he had other children asking him about it. Nick also needed a bit more time to get his head around it first.

In the end, once we’d had a bit more time to digest the information as a family, we did start to  tell our friends. Sure enough, one family must have talked about it in front of their own children, as Leila came home from school reporting that one of our friend’s kids had asked, “Has Edward got autism?” I was just very glad that we had sat our kids down and explained autism to them first. I wouldn’t have wanted any of my kids hearing about Edward’s autism as if it was something scary and frightening.

Edward didn’t want his primary school class to be told about his diagnosis, although this was something offered to him by support staff.

Towards the end of primary school, Edward was open to letting family friends know about his diagnosis. We found a very useful book called, “Can I tell you about Asperger Syndrome?” by Jude Welton. It’s a short read and can be read by children and time-pressed adults alike. It gives a quick overview of what it is like to have Asperger’s from a child’s perspective. Quite a few family friends read the book and I think it gave them more understanding and patience toward Edward.

Once Edward reached high school, I realised that a real shift had occurred in terms of how he viewed his autism diagnosis. He wrote this when he was 13 years old:

“I have a condition called Autism. It affects my behaviour, and makes me less social but more focused.

Most people see autism as problem but I see it as a feature of personality. If there was a cure I would not take it…. because I would die and be replaced by another person inhabiting my body. It would not be me, but a less interesting version of me without my best and worst features.”

If you are telling people about your child’s autism, I think it is worth pointing out what their strengths are as well as their weaknesses. I recommend letting people know what things will help them stay calm, what things they will enjoy and what they will be motivated by, rather than only focusing on the negatives. Taking this approach is a more positive way of explaining who your child is and what they need.

A few months ago, I read an article about a 19-year-old boy who had been diagnosed with autism as a young child. His parents had kept his diagnosis a secret from school, friends and even grandparents. They claimed that they had successfully managed to help their son pass as “normal.” I wonder how on Earth they did this – and I also worry about the mental toll this took on their son. I want Edward to know he has autism. I want other people to know and understand what this means and I don’t want him to have to hide.

Our kids will become adults sooner than we can imagine, and a world where autism is less stigmatised will be a better place for them to flourish.

Although I would never wish any of the difficulties that Edward has experienced through his autism on him, he simply wouldn’t be the interesting character that we know and love if he wasn’t autistic. The challenges he has faced have forced him to develop buckets moreof  self-awareness, reflection  and perseverance than I had at his age, and I can’t help but hope that this will stand him in good stead for the coming years.

A version of this post first appeared here.