These four lines come from brilliant poem by Devereaux Frazier in which this talented young poet captures Asperger’s and portrays it to a tee. You can read the rest of it, and more of Devereaux’s poetry and musings here.
The point of poetry is to evoke emotion and thought processes. The words mean different things to different people; so what I take from Devereaux’s poetry might be totally different to what other people take. That’s the point.
For me, Aspergers Will Always Be By Our Side is a reminder that this is who Geordie is, and we should embrace his personality rather than try to fix it. Some lines ring particularly true:
♥ I need more honesty
Geordie has an inbuilt lie detector (or ‘trying to shield you’ detector) — he needs to know the full truth about things that are going on, nice or not. And he can pick a non-genuine person (‘they don’t get me’) a mile off.
♥ the world is just too loud
Yes — literally and figuratively. Loud noises are confusing and confronting. Getting in Geordie’s face is never going to win you brownie points.
♥ I need more routine; and less surprise
Sameness brings comfort; it’s only when sameness brings boredom that I know we can safely move onto something else. Surprises? Definitely not. The unknown and the unexpected brings nothing but anxiety.
♥ we are what we love
Geordie knows himself so well. My greatest pride in him is that he is true to himself and what he wants/needs — without worrying what others will think of him.
If you want some truly deep insights into what it means to have Asperger’s, Devereaux’s poetry can give you just that. But you have to be willing to listen.
Having a child with Asperger’s doesn’t make me all knowledgeable on the subject. I’ve said it many times — what I write on these pages come solely from my own experiences and don’t apply to everyone … or anyone.
I love that there is a growing community out there of people who are sharing their own experiences, and listening to those of others.
There is one thing I think I have never done when it comes to Geordie’s diagnosis — use it to completely and totally justify his behaviour at all times.
This is the one thing that could be our undoing in the fight for understanding.
The vast majority of the people I know who are on the spectrum, or have children on the spectrum (including those whose brilliant blogs I follow) do not do this. They are fighting for recognition and for understanding about what makes people with Autism/Asperger’s ‘tick’ — they are open and honest; they don’t seek to justify their behaviour or reactions, but to explain them in a way the rest of us ‘neurotypicals’ might be able to understand.
Then there is the very tiny minority who use a diagnosis (or even those who ‘suspect’ a diagnosis) to excuse behaviours, e.g. The child kicks his teacher — immediate response: “Oh, he did it because he has Autism.”
This is not on!
Over the years, Geordie has exhibited a whole range of behaviours — many of which I could have blown off as “it’s because he has Asperger’s”.
Some of his behaviours and reactions have been because he hasn’t been able to process and replicate the ‘social behaviour’ required, or he has gone into overload, or he has been goaded into the behaviour by someone who ‘doesn’t get it’.
These behaviours have been related to the fact he has Asperger’s — but I’ve certainly never left it at that. I see them as calling cards to action: find out why the behaviour happened; work out what we can do to help Geordie react in a more acceptable manner the next time it happens; explain it to people and work with them on it.
But — some of his behaviours are ones he has chosen. He is very clever, and I am under no illusion that sometimes he acts a certain way because he has learned that he may be able to get away with it due of his diagnosis.
The trick is to be able to tell the difference.
I don’t always succeed.
I have totally stuffed up on numerous occasions. The Asperger’s learning curve is not a singular curve, but fraught with many dips, turns and rises. This is not an excuse — I’m working on it and talking about it; this is the difference between an excuse and a reason.
There is a mighty fine line between using Asperger’s as an excuse for behaviour — and using it as a reason.
The people who use it as an excuse are not helping any of us — not only because they are perpetuating the myth of ‘we don’t have to comply because we have special needs’, but they are also not doing any favours to the child who is then denied the opportunity to learn and develop.
People who use a diagnosis as an excuse are also greatly assisting the negative attitude towards people with special needs who are seen as being able to get away with anything and taking time and resources away from ‘normal’ people.
There needs to be a greater understanding of the needs of people on the spectrum. It’s okay to explain behaviours in terms of an Autism/Asperger’s diagnosis — but the blanket approach to this is not okay, and it is not okay to roll out this excuse without following up on it.
As far as I’m concerned, being vocal about what we are doing and why — and being seen to be proactive in working together with other people to aid understanding and change — is the best path towards acceptance.
Over the years I have had to answer a lot of questions about Geordie and his ‘condition’ (other people’s word, not mine). Most of these questions come from well-meaning souls; they are just trying to understand Geordie. I always do my best to answer the questions, to put people at ease and to help them understand — for Geordie’s sake.
Often, though, the questions are really hard to answer because they are, in essence, asking me to define Geordie, to pigeon-hole him and to label him. It is incredibly difficult, in a world that relies on labels and definitions, to make people understand that Geordie has just as many complex behaviours, feelings, likes, dislikes and emotions as any other ‘neurotypical’ child.
Yes, I apply a label when I tell people Geordie has Asperger’s Syndrome, but that is as far as my labelling goes because:
Geordie is Geordie.
Geordie is not Asperger’s.
My son has Asperger’s, but he is as unique as the next person. As he has grown, his personality traits, quirks, likes, dislikes and fears have all changed along with his physical attributes; just like everyone else.
Today, Sue Larkey shared the following script from the Facebook page of Asperger’s Syndrome Awareness. I wish I’d had this script years ago!
Ask me to tell you about my son — not a problem. But don’t ask me to classify him. And don’t expect that what I tell you today is going to apply to him for the rest of his life.
Along with sound, touch (or texture) is an area where Geordie has, in the past, suffered from sensory overload.
I need to preface this by saying that I know there are many people with Autism who are unable to cope with skin-to-skin touch, i.e. hugging, holding hands, kissing etc. We are so, so lucky that this does not apply to Geordie. In fact, skin-to-skin contact is one of the few things that can pull him out of a meltdown. I thank the powers that be every day for the fact I can hug, cuddle and kiss my boy.
Clothing has been the ‘goliath’ for Geordie.
We’ve all suffered, at some time, from the scratchy jumper or the too tight neckline or the tickly tag. It’s irritating and uncomfortable, but manageable. Not so for Geordie. According to Tony Attwood, these clothing mishaps can be downright painful, to the point where the individual is unable to function.
Again, as with our experience with loud noises, I wish I had known this when Geordie was a toddler. It may have explained several things:
♦ the need to cut out every bit of the clothing tag from every item of clothing as failure to do so would cause great distress
♦ the refusal to wear socks for a whole year; shoes without socks were fine, but socks in shoes meant standing up and walking was just not going to happen
♦ the difficulty of transferring from summer clothes to winter ones; several months of bare legs meant moving back into long pants was a nightmare.
These days clothing remains an issue, albeit a more manageable one. We still have to cut the tags off clothing and struggle a little to make the move back into long pants. There are also many items of unworn clothing in the cupboard; most of them are there because “I don’t like how they feel”. Personally, I can’t tell the difference — they all feel the same to me — but Geordie obviously can.
I imagine shopping for someone with sensory issues would be somewhat similar to grocery shopping for someone with food intolerance — you cannot just pick items willy-nilly and assume they will be fine. I have learned to: forget about buying anything in denim; leave clothing with cuffs (jumpers and track suit pants) on the shelves; and test the stretchiness of the neckline before purchasing t-shirts and jumpers. We also don’t do shirts with buttons or collars; and anything with a hood has to be really special to get a look in.
It’s all manageable and is just a case of being aware; although, just for fun, Geordie will occasionally throw in a curve-ball and refuse to wear something he has been fine with for years.
Given what I know now about sensory overload for touch, I am prone to wonder if this had anything to do with Geordie’s sleeping issues as a baby. Was it the texture of his pyjamas, or the sheets, or the blanket? Was it the open space around him, perhaps — little body in a big cot? Was it the lack of skin-to-skin contact? I suspect we will never really know.
What these questions, and our many years of clothing wars, do show, however, is the need to be flexible and not make assumptions. Trying to identify the cause of sensory overload meltdowns, and make adjustments to accommodate them, is much more productive than telling the child to ‘grow up’ or looking to punish him for his behaviour (both of which I have been told to do, or witnessed being done).
Geordie’s clothing preferences are just another part of his beautiful and quirky personality.
I wish I had known about Tony Attwood at the time of Geordie’s diagnosis. The man is brilliant and explains the ins and outs of Asperger’s in a way nobody else seems to be able to do.
Recently, I completed an online course with Tony. Ten years down the track with numerous ‘courses’ under my belt, and I still gained a host of practical information and experienced a myriad of ‘a-ha’ moments.
The section on sensory overload was of particular interest because this is something Geordie has experienced over the years in varying degrees of severity.
Being subjected to a certain powerful or unexpected sound, smell, taste, sight or texture can be irritating, distressing or frustrating for the so-called ‘normal’ person — but for someone on the spectrum the same experience can be downright painful.
One point Tony made in the webinar was that a tendency to sensory overload in any given area is permanent. At the time, I found myself disagreeing. Over the years, Geordie has experienced numerous bouts of sensory overload, most notably with sound. I thought he had grown out of it, until something happened last night that made me want to apologise to Tony for doubting him.
First though, I’ll provide a bit of background.
Our initial (known) experience with sensory overload was in the public toilets. Out of necessity rather than preference, we would have to take Geordie into these places to change nappies and, later, to go to the toilet. Every single time we walked in, he would start screaming. Loud, ear-piercing, uncontrollable screaming that would not stop until many, many minutes after we had exited the area. It took several months to cotton on to what was causing this — the hand dryers. Those things are loud at the best of times, but for Geordie the sound must have been excruciating because the minute he saw one, even if it was off, he would go into meltdown. It got to the point where we would have to slink in so he couldn’t see the dryer, rush him out if someone used it, and even ask people to refrain from pressing the button until we had left.
Then, one day, the meltdowns stopped.
For a time, as a toddler, Geordie was also sound sensitive to helicopters. At first it was just the helicopters, then it was hot-air balloons, planes and helicopters, then the meltdowns began if a bird flew overhead. We became hyper-vigilant whenever we were outside. If we saw any sort of speck on the horizon we would either quickly coax Geordie inside until it had passed, or play ‘let’s cover our ears’.
Then, one day, the meltdowns stopped and it was safe to go outside again.
Certain activities at school have also presented an issue over the years: whole school assemblies; excursions that included a bus trip (which is most of them); concerts and band performances; and carnivals. I suspect extra noisy classes may also have caused issues as Geordie went through a stage where he would leave the room on a regular basis. These activities did not cause a traditional meltdown as such, but a flat refusal to enter the space from where the noise was coming.
Then, one day, this all ceased to be a major, daily issue.
We have been lucky to have been mostly supported in finding ways to deal with Geordie’s sensory overload with sound. Many of his teachers have found ways around it, helping him develop noise tolerance strategies; family have been supportive; and even many strangers have been understanding once we explained what was going on. (On that note, though, there seriously needs to be more education about the difference between a tantrum and a meltdown.)
For the last couple of years, excessive sound has elicited no more of a reaction from Geordie than it has from anyone else. So, perhaps you can see why I thought he’d grown out of it, but last night put paid to that gloating feeling I’d been experiencing.
‘Owww,’ Geordie said to me as he walked into the loungeroom.
‘What?’ I replied, ‘Did you hurt yourself?’
Geordie covered his ears, ‘That noise hurts my ears.’
What noise? I couldn’t hear anything at all.
‘The buzzing,’ he said, ‘from the lights.’
I turned the TV off and listened intently. There was indeed a faint hum coming from the lights. I could barely hear it, but it was hurting Geordie’s ears and we had to turn the dimmer switch on the lights down until the noise stopped hurting.
The sensory overload is still there; he’s just learned how to deal with it.
Being a parent of a child on the Autism Spectrum is a massive, never-ending learning curve.
There are (less-than-)average days, good days and brilliant days — and then there are downright, awful, wish-it-wasn’t-you days. For me, the latter exist, but are increasingly few and far between.
On the not so good days, however, I think it pays to remember that whatever you are feeling and going through, it is worse for your child.
As parents we can forget this — and that’s alright … sometimes. It is ok to feel selfish and self-centred and miserable … as long as we pull ourselves out of it. We are all only human, after all.
One of the hardest things, as a parent (of any child, let alone a child with Autism/Asperger’s) is the building of the thick skin. There are many people out there who are quick to judge and/or offer their ‘advice’ (which can often be thinly disguised criticism). We need to learn to listen to all of this, but to not take it personally — or sometimes to totally disregard it.
Another thing we need to learn to do is to trust our own instincts. I know my child! I (often) know the difference between when the Asperger’s is speaking and when he is just playing me (and when he is just being a brat, because he can). Self doubt does not help anyone.
The other, and probably most important, thing we need to develop as parents is the ability to distinguish the ‘advice givers’ who know what they are talking about from those who ‘have no bloody idea at all’ but like to sound like they do.
With Autism, this can be difficult because nobody with Autism/Asperger’s is the same. What works for me may not work for you. (This is something I hope I manage to impart on this blog — I write about my own experiences, I am not saying they will be the same as yours.) This is where learning to trust our own instincts comes in … for me, I like to listen to and read about the experiences of other people, but I have to be the one to decide whether what they are saying applies in my own circumstances.
The other day, a blogger I follow wrote a post addressed to parents of recently diagnosed children. It was a brilliant post and one I wish I’d been privy to when Geordie was younger. I choose to follow this blogger because she writes honestly and from the heart. She also happens to have Autism and her posts give me insight and perspective.
In this particular post, we are given seven down-to-earth and succinct pieces of advice — from why we shouldn’t ‘grieve’ when we find out our child has Autism, through to never ‘assuming’ anything about behaviours and loving our children for who they are and what they can achieve at any particular point in time. If you are interested, you can read her post here. Remember though, none of us who blog on this subject claim to be experts — we are just sharing our experiences, more often than not we write because it helps us gain clarity in our own lives.
I’ve said it before, and I’ll keep on saying it: being a parent to a child with Autism/Asperger’s is a tough gig. You have to be strong and resilient. You have to be flexible and be able to maintain a sense of self. But, when you are allowed into your child’s world — every tough moment melts away into nothingness.
In a nutshell, it’s an ‘out-of-uniform’ day masquerading as a fundraiser. Students are allowed to ditch their uniforms and wear something else (in this case, their pyjamas), but are ‘fined’ a gold coin which goes towards fundraising efforts for a nominated charity.
Today is all about being able to wear your ‘onesie’ (or pyjamas) to school for the day.
‘Out-of-uniform’ days work a treat — minimal effort on the part of the organisers, and a ‘fun’ way for kids to help raise money.
You may have noticed I emphasised the word fun.
There are many kids (and adults) who love dressing-up; they relish the idea of being able to wear their pyjamas (or some other costume) to school for the day. It’s FUN.
Geordie is not one of those people. He finds the notion of wearing something in an out-of-context situation (i.e. pyjamas when you are not going to bed, or a fancy-dress costume when you are not in a play) to be intimidating. It makes him uncomfortable. It is the opposite of fun.
I feel exactly the same way. I really, really don’t like fancy dress. It makes me uncomfortable and it most definitely is not my idea of fun.
This, however, is where the similarity ends for the two of us.
Growing up, I felt compelled to ‘go with the flow’ and participate in this ‘fancy dress fun’. I would stress for days about it. On the day, my stomach would be in knots and I couldn’t wait to get home to tear off the offending garments. Even now, it is only recently that I have had the courage to put my foot down and say, “No, I don’t do dress ups.” But I still stress about it — What will people think? What will they say? Will I be the only one?
Geordie, on the other hand, has always blatantly refused to participate in such days; whether it be a fundraiser, a themed party or Book Week celebrations — he insists on wearing his normal clothes. He doesn’t care if he is the only one; his only concern is that he feels comfortable. It has taken me a while to realise that, for Geordie, ‘being the only one’, and standing out becasue of that, is NOT an issue for him.
So, right now, he is dressed in his uniform. He has his ‘gold coin donation’ in his bag. In about 20 minutes, he will be heading off to a schoolyard full of children wearing their onesies; he won’t be the only one wearing his uniform, but he will most definitely be in the minority.
I am so, so proud of him.
In Geordie’s world of Asperger’s — where there has been so much confusion, so many obstacles and a constant flow of ‘learning curves’ — being able to stand up and say, “No, I’m not doing that,” is HUGE!
At his young age, he is not only aware of what makes him uncomfortable, but he has the courage to be his own person and to not ‘go with the flow’ when it doesn’t suit him.
If that’s not self-confidence, and if it’s not setting him up for a positive future, then I don’t know what is.