Through the efforts of autistic people and their supporters – friends, family, carers, professionals, charities – knowledge and awareness of what autism is is increasing.
We know, for example, that autism is a lifelong condition and that it’s a neurological difference in the brain that can cause difficulties with social interactions, sensory processing issues, problems with regulating emotions and speech and language, among other things. We know autism is a ‘spectrum condition’, meaning that each person with autism is pretty much unique in the traits that they display; there is no single defining sign or symptom that says, “yep, that’s autism!”
But, for all the things we know autism to be, there are several things that autism is not…
Autism is not… curable
As mentioned, autism is a neurological condition – a differently-wired brain, if you will. It cannot be ‘cured’, although autistic people often find ways to manage many of the issues and difficulties presented to them so that they are able to function better in a world that is not geared up for them.
Autism is not… bad parenting
Many parents, myself included, have been made to feel that our children’s autistic traits are the result of our poor parenting skills, or a lack of discipline. Judgement from professionals, or family members, or other parents or even just random strangers in the street can result in feelings of inadequacy, as though we’re just getting this parenting thing all wrong. Truth is, autism is not caused by bad parenting, and, unless you are putting your child at risk of harm, how you parent is nobody else’s business.
Autism is not… the whole person
When you live with someone with autism, it can be easy to forget that autism is not all they are. Autism can have such control over all of our lives – in what we do, where we go, what we eat, who we see, what we wear – and more – that it’s sometimes all we think about, day in, day out. If we’re not careful, we lose sight of our child’s whole personality, and that autism is just a part of them; it doesn’t make up their entire being.
Autism is not… an excuse for bad behaviour
Autism and poor behaviour are often thought of as going hand-in-hand. And, while it’s easy to blame autism for bad behaviour, it really shouldn’t be used as an excuse all the time. Yes, there are times that poor behaviour is due to a lack of understanding, or a meltdown, for example, but those things can’t be helped. We should never stop trying to teach our children what’s acceptable and what’s not.
Autism is not… anyone’s fault
One of the first emotions when you hear your child is on the autism spectrum is one of guilt. “What did I do wrong?” “Was it something I did/didn’t do when I was pregnant?” “Could this have been prevented?” The answer is no, probably not. Autism isn’t caused by vaccines, it’s not because you had a glass of wine the week before you found out you were expecting… It’s most likely a genetic thing, and is certainly not your fault.
Autism is not… Rain Man
For many people, their only experience of autism is in films or TV shows such as Rain Man, or The Good Doctor. It’s a very common assumption that all autistic people are super-clever – geniuses, with a propensity for maths or memorisation skills. Not true. Many autistics are on the Asperger’s area of the spectrum, or have ‘Savant Syndrome’, but many do not possess any kind of genius-level capabilities, or find learning hard. If you meet a person with autism, please don’t ask what their ‘special skill’ is!
Autism is not… just for boys
Yes, this myth still perpetuates, even among professionals! Hey, I have news for you… Girls can be autistic too! I should know… Many more boys were (and still are) diagnosed with autism than girls, mainly because there is often a difference in the presentation between the genders (but not always – see my next point!). Autism can often seem more obvious in boys, and many girls are experts at hiding their traits in order to fit in. The National Autistic Society says that, “Various studies, together with anecdotal evidence have come up with men/women ratios ranging from 2:1 to 16:1.” I would hazard a guess that the ratio is actually a lot closer to equal than stated.
Autism is not… not always masking
While many girls are brilliant at masking their autistic traits, and develop various coping mechanisms in order to fit in with their typical peers, this is not always the case. Some girls, like Tink, present much more like a typical autistic boy (if there is such a thing!), and, similarly, many boys are great at masking like girls. I get a bit annoyed at articles, studies, quotes, etc that assume all autistic girls present the same!
Autism is not… to be feared
Autism is not well understood by so many, and this can lead to fear about autism and autistic people, and their sometimes unpredictable behaviour. However, the more we try to inform people about autism, the more they will understand and the less fear there will be. Simples!
Autism is not… something ‘everybody is a little bit’ of
This really grinds my gears! You hear it so often, don’t you? “Oh, we’re all a little bit autistic,” or, worse, used as an insult: “That’s so autistic!” Actually, no, we’re not all autistic (but imagine what an amazingly different world it would be if we were!). You can’t be ‘a little bit autistic’ – you either are, or you aren’t. You may have one, two, or even a few traits that are common in those on the spectrum, but that doesn’t not make you a ‘bit’ autistic.
Autism is not… new
“We didn’t have this ‘autism’ in my day…” Ever heard a comment like that? Sorry, to disappoint, but yes, you did. Only, back then, autistic people were labelled as ‘backwards’ (and worse) and were kept hidden away, often in institutions. Autism has probably always existed in some shape or form, and many famous people in history are now thought to have been on the spectrum, including Einstein, Lewis Carrol, Michaelangelo, Charles Darwin, Thomas Jefferson, Hans Christian Anderson… you know, many of the people who made a huge impression on the world #justsaying
Autism is not… a reason to say sorry
If you hear that someone you know has been diagnosed with autism, please don’t say you’re ‘sorry’. It’s not a bad thing, and there’s nothing to be sorry about! Yes, it’s likely their life will be very different now, but that might just be for the better. A diagnosis of autism is not a bad thing! Read more about what you shouldn’t say to the parents of an autistic child (and what you should) here.
Autism is not… always the same
Autism is a condition often bound by routines and familiarity, but that doesn’t mean that it’s the same for everyone on the spectrum. It isn’t even the same from one day to the next in many cases! Routines shift, interests change, adaptations are gently introduced… Autism doesn’t always have to feel like you’re living in The Truman Show or Groundhog Day, even though it might feel like it for a while!
Autism is not… just for children
Newsflash… adults can be autistic too! I know, right?! All those children who are being diagnosed with autism will not turn 18 and suddenly stop being autistic. Misleadingly, there’s actually a diagnosis called ‘childhood autism’, which, when you read into it, talks about autism being a lifelong condition… Go figure! Adults with autism need just as much support as children, as the challenges they face evolve with their maturation, such as the desire to live as independently as possible, the navigation of relationships, and the world of (un)employment.
Autism is not… a reason to place limits
This is something I feel so strongly about. Just because a person is on the spectrum, does not mean that we should limit them. We should not assume they can’t, won’t or don’t want to. We should not assume that their condition places restrictions on their abilities or diminishes their desires. I strongly encourage Tink to try anything and everything she can, within reason. She showed an interest in skiing, so she’s had her first lesson at that; she loves to climb and swing and jump; if she wants to try a new food I don’t stop her, despite being 99% sure she won’t like it. She keeps asking if we can go to the moon and, do you know what? I tell her that maybe one day she will. Because who am I to limit her? Who am I to tell her her dreams and ambitions aren’t valid or possible?
Autism is not… a reason to abuse, bully or treat unfairly
All too often we see stories in the media about autistic people who have come to harm at the hands of others. Children who have self-harmed, or even taken their own lives due to bullying; adolescents locked up in ATUs like prisoners (only with worse treatment!); adults who are discriminated against in the workplace. People with autism have enough to deal with without deliberate actions by others to use their condition as an excuse to treat them differently, unfairly or abusively. It has to stop.
Autism is not… the end of the world
A diagnosis of autism, whether for your child or for yourself can be confusing, a relief, devastating, exciting, a ‘lightbulb moment’. What it isn’t is the end of the world. Life still goes on with autism – nothing has changed but a few words on a document. Adaptations will most likely have to be made, there may be access to more resources, and financial benefits (but possibly a fight for those too), there may be a sense of finally knowing who you are. Having a child on the spectrum has certainly brought unexpected benefits to me. It most certainly isn’t the end of anything, but only the beginning!
I asked my wonderful community on the It’s a Tink Thing Facebook page for their thoughts on what autism is not…
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Kelly is a mother of two – her son H and daughter Tink. H is home educated, Tink is autistic. Kelly is a self-employed Virtual Assistant… Life is busy!
Great post 💝
As an autistic girl who can’t mask at all(idk how and at times I wish I could) I’m glad you are saying this. Although it makes me a bit frustrated and confused as to how nobody diagnosed me until I was 16.
What a great post – I really wish everyone in the world would read this!!!
Superb article x summed up.beautifully. It’s a different perspective of the world. I often wonder what neurotypical seem like to autistic people.
Fantastic! Love this!