The internet is amazing, isn’t it?
My generation is the first to know what life was like before and after the Internet. Even the evolution from my early teenage years to now is insane. Do you know how many times a day I google things? Look for recipes, DIY projects and music? Virtually anything you have ever wanted to know can be found on the World Wide Web. #mindblown
Operating this blog is something I enjoy very much for various reasons. It’s an outlet for me, creatively and emotionally and it’s connected me with some pretty awesome people from all over the world.
Recently, I was contacted by a lovely woman named Chantal. She is from England and autistic. She graciously offered to participate in an interview style blog with me and I’m so excited to be able to share it with you! Admittedly, my personal experience with autism comes down to my role as a parent. Chantal really opened my eyes to a different perspective which has inspired me to learn more about autism in other countries and cultures.
So, without further ado, here is the interview!
1. At what age were you diagnosed?
23! I had a good feeling that I was Autistic before that, I’m actually the one who sought out a diagnosis in the first place, but it wasn’t officially recognised until relatively recently.
2. What severity were you diagnosed with?
“Severity” is the wrong way to be thinking about it. I am not more or less Autistic than anybody else on the spectrum, but I do have different strengths and weaknesses. How do you quantify what makes somebody ‘severely’ Autistic? Whether or not that are verbal? I can speak most of the time, but it’s an ability that can slip away from me if I’ve had a rough day, or a stressful week, or just because I’m tired.
I am extremely sensory sensitive, but I’m not overly sensory avoidant.
To use a metaphor, the Autistic Spectrum is less like a black to white gradient, and more like a colour wheel, and rather than being in a fixed location on this colour wheel, I and everyone else on it tend to move around a bit.
3. What treatments did you receive?
Post diagnosis? None, really. I was given a sensory profile assessment and I attended a post diagnosis support group with a few other people who had been recently diagnosed, (Including a lovely lady who’d asked to be assessed because her son was diagnosed as Autistic, and a charming gentleman in his sixties!) but those aren’t really what I’d call “treatment.”
Autism isn’t something you CAN “treat.” What you can do is learn about it, and how it impacts each person specifically, and how to work around it.
Probably the closest I’ve come to “treatment” would be talking to other Autistic people about shared experiences and exchanging tips and tricks. But then, passing down experience and wisdom is how we teach people about anything and everything.
4. At what age did you know that you had autism? How did you react to the news?
There wasn’t really a specific age that I knew I was Autistic. It was more like there was a dawning realization over a period of years. When I was a child, everybody knew that there was something going on, but nobody realized exactly what it was. This is probably primarily because it’s only within the last several years that people have realized that Girls can be Autistic, and that girls are Autistic at the same rate as boys are. Autism is still incredibly underdiagnosed in women.
I’ll never know if it would have been easier for me growing up if people had realized I was Autistic. It’s possible there would have been better support for me, but it’s equally likely that well intentioned adults would have done more harm than good. It varies from place to place and from school to school, after all.
The first time I heard about Autism, it didn’t even remotely occur to me that I could be Autistic because it was presented so negatively. One thing I remember clearly was that when my school science teacher was suppose to be teaching us about Autism, he put on Rain Man for us to watch. This was entirely unhelpful. I remember my teacher pointing out scenes like when Raymond put a metal can in the microwave and had a meltdown due to the resulting sparks and the fire alarm going off, and citing it as an example of why Autistic people can’t function properly on their own. Except I was already well aware of what happens when you put metal in a microwave, and I’d experienced fire alarms in the past, miraculously without throwing a screaming fit the moment the alarm went off.
I remember thinking about how glad I was that I wasn’t Autistic. And, honestly, in hindsight this would have been funny if it wasn’t so sad.
It was around the age of sixteen that I started finding out that the majority of the friends I’d made online were Autistic. It’s probably a good thing that I’d bonded with them before I found out, because at the time my view of Autism was incredibly negative due to the information about it that had been presented to me at the time and how it had been presented.
When only one friend had told me, it was a little jarring but I quickly brushed it off. After all, I’d known them for a while and I knew what they were like. They hadn’t become Autistic, they’d been Autistic the whole time. Autism isn’t something you can pick up, after all. So what did it matter that this one friend happened to be Autistic?
And then another friend turned out to be Autistic.
At one point I made a joke about being the only Neurotypical person in the group, which is hilarious in hindsight because of how wrong I was.
I started getting interested in psychology when I was twenty, and among other things I started looking through lists of Autism symptoms. I started realizing how many of them applied to me, and this was when I first started to suspect that I might be Autistic, and the more I read about it and considered how many of my friends were on the spectrum the more sure I was.
The first Doctor I asked for a referral from told me that even if I was Autistic that I didn’t need a diagnosis, the second Doctor I spoke to referred me to the correct department right away.
As for how I felt when I finally got confirmation that my suspicions were right?
Relief would be the best word for it.
There was some vindication and some liberation in there too.
For the first time in my life I could say with absolute confidence that I’m not a freak or a weirdo. I’m not broken. There’s nothing wrong with me. I’m just Autistic is all.
Having an explanation for why I am the way I am has done me nothing but good and I’d wholeheartedly encourage anyone who suspects they may be Autistic to seek out a professional opinion on the matter. Knowing for sure either way is far better than not knowing.
5. Were your parents supportive and helpful? Or do you feel that they held you back in any way?
My parents have always done their best to be supportive of me, especially my mother. They haven’t always succeeded, but I don’t hold it against them. They are, after all, only human and sometimes other factors can get in the way of things.
I think not knowing what was going on with me was as hard on them as it was on me when I was a child. It’s hard when you love someone and want them to be happy and healthy, and you know they’re not happy and you suspect they might not be healthy and you don’t know why and you don’t know how to help them. And things were very hard for a very long time, and they made mistakes. Every parent does, though. Raising children is not a fine art.
My mother was with me when I got my diagnosis and we’ve talked about it a lot. She’s as happy to have an explanation as I am, but mostly I think she’s happy that I’m happy.
I’m not sure what my father thinks about me being Autistic. We haven’t really talked about it.
6. Did you deal with bullying?
Short answer: Yes.
Long answer: I honestly cannot adequately describe just how badly I was treated by the other children at every school I went to. Any time I tell people about the things that happened they express outright horror at the things that happened to me.
If you asked any of the people who bullied me in school why they did it, they wouldn’t tell you that it was because I was Autistic. They didn’t know I was Autistic. However the things they were bullying me for were things I was doing because I was Autistic.
This wasn’t a problem with me, however. Bullying is a disgusting thing to do to someone no matter who they are or what the “reason” behind it is, and my teachers should have done something about it, because there is NO WAY they didn’t know it was going on.
7. As an adult, are you forthcoming with the fact that you have autism? Or is it something you tell people only if it seems necessary?
I’m very forthcoming about it pretty much all of the time. It’s partly symptomatic info dumping and partly spreading awareness. People usually won’t realize I’m Autistic unless I say so, so it’s very effective in making people realize that there’s more too it than just Rain Man.
The one exception is that I won’t mention I’m Autistic when I’m applying for a job until after I’ve been given the position. I don’t want to risk being rejected based on assumptions that might be made about me which might not even be correct. Once I have been given a job I do ensure that my employer knows, however.
8. As an adult living with autism, do you receive any support or therapy?
The support I get comes primarily from friends and family, and has as much to do with my personal strengths and weaknesses as it does with the fact that I’m Autistic. Autism is a factor in a lot of these things, of course, but each problem is tackled individually.
I’m very independent, however when going into new situations and to new places it is best that I have someone with me for familiarity. I am far less likely to have a meltdown if someone I know is nearby, even if they’re not actively partaking in the activities with me.
Once I’m familiar with what I’m doing and where I’m going and who I’m going to be with, this necessity goes away. That’s honestly about it.
Not everyone who is Autistic is the same as me, however. We’re as varied as any other group of people. Some of us take longer to reach this stage of independence, some of us manage it faster, some of us never manage it at all. The important thing is knowing what you can and can’t do, and what you can do with help, and why. Self awareness takes time, and that’s okay.
9. Do you think that, in the grand scheme of things, children with autism get more focused on than adults with autism?
Yes, particularly in the news and in the media. I don’t think it’s malicious, but a sob story about a poor nonverbal child with autism and other disabilities is more compelling than the reality that Autistic people are just people, and we have our own challenges, but so does everybody else, and we grow up just like everyone else, and we live our lives just like everybody else, and we grow old just like everybody else. The story that we’re not so different doesn’t get told because, frankly, it’s boring.
And the few high profile characters in movies and TV aren’t exactly flattering or even particularly accurate.
I mentioned Rain Man already, and for a while that movie was the only representation we had in any high profile fiction. More recently we have Sheldon from The Big Bang Theory, except even though he fits all of the diagnosis criteria (On top of being infantilized and constantly ridiculed) the shows writers and producers refuse to admit that he’s Autistic. I’m not sure if it’s because they think saying so would reduce their viewership or if they realize that it would be in bad taste to be constantly making fun of an Autistic man the way they do, but the fact still stands that anyone with even a basic understanding of Autism can see it and it’s frankly insulting.
The good news is that there have been more portrayals and more positive portrayals of Autistic Adults recently, and I believe this trend will increase as more people become aware of what Autism is and what the reality of it is. Representation matters, and positive representation is vital, for everyone.
And this is especially true in this case. I hate to turn this in such a grim direction, but news stories crop up every year of parents murdering their Autistic Children because they believed they were never going to be able to grow up happy and fulfilled and independent. Because they believed that they were doing their child a favour.
This is not okay.
This is terrifying.
And the amount of sympathy directed toward the parents in these cases is mind boggling. People seem to think that someone being Autistic makes their murder somehow more acceptable. I don’t think I need to tell you why it’s not.
10.Do you have an opinion on the correlation between vaccines and autism?
Correlation does not imply causation.
The claim that Vaccines cause Autism has been debunked countless times by much more intelligent people than me. There is a lot of reading to be done on the subject if you want to go in depth into it and I’m honestly not the best person to ask.
It’s an impossible subject to avoid if you’re Autistic, of course, so whilst I’m not an expert I have concluded that the correlation is entirely coincidental.
However, if somehow it were proved between all reasonable doubt that Vaccines do cause Autism in some children, I would still plan to have my children vaccinated, without hesitation. Vaccines protect everyone, even people who for one reason or another can’t actually be vaccinated themselves. Herd Immunity is important for people who are immunocompromised in some way.
There are countless diseases that used to be commonplace and used to kill thousands of people every month, which are now on the verge of going extinct.
As of September 2016, North and South America are completely free of Measles. If we keep vaccinating our children for a few more generations it may never come back.
And that is worth far more than a few more people like me.
11. Is there any bit of advice you would give to someone that is new to their autism journey?
If you’re Autistic, just remember that nothing has changed. You are still the same you that you’ve always been, just now you understand yourself a little better. If you want to read up more about what this means for you, ASAN is one of the best places to start. You are not broken. You are not a freak. You are not alone.
If you are a friend or a relative of someone who is Autistic who has been diagnosed as an Adult, also remember that nothing has changed. They are still the same person that they always were, just now you understand them a little better. Communicate with them, however you can. They will tell you what they do and don’t need. They are the first and foremost expert on themselves, just as you are the first and foremost expert on yourself.
If you are the parent of an Autistic child, I will repeat: don’t panic. This is not the end of the world. Your life and their life is not ruined forever. There are resources and support systems in place that you can use, and people who will be willing to help you. ASAN is your friend, Autism Speaks is not.
The hardest part of this is going to be learning how to communicate with your child, and you will have to adapt to them as much as they adapt to you in this regard. If they cannot speak, learn how to sign and teach them how to communicate in this way. Perhaps if they cannot speak they will still be able to read and write. Text to speech functions improve every year. If all else fails, your child will connect far more easily with other Autistic people. We are one percent of the population: There will be someone willing to help you with this. Find them.
Do not force your child to act Neurotypical. Do not stop them from stimming, unless it is causing them harm, and if it is find an alternative stim they can use instead. Do not force them to hug and kiss you if they don’t want to. (In fact, don’t do this with any child regardless of if they’re Autistic.) Remember that Meltdowns are involuntary, and that your child will learn how to recognise when they are coming on and self sooth. Remember that even if they never say “I love you” it does not mean that they don’t. They’re your child, of course they love you, they may just express it differently.
And finally, members of the Autistic community prefer identity first language. Autism is not something I have, it’s something I am. It’s not my pet, it’s not something I keep in my cupboard, it’s a fundamental component of my mind and personality and very being. Autism colours everything about me, even if it doesn’t draw the lines, and it is nothing to be ashamed of.
Chantal Potter is an Autistic Singer/Songwriter living in England. She is an aspiring Actor and has a strong interest in Psychology. Her first Single, Looking In, is available for purchase on Amazon, iTunes, Google Play and CD Baby.