Quirky

This is a guest post from my daughter Hannah. It is excerpts from two letters of encouragement she wrote to a recently-diagnosed friend, and she asked me to share them here, in the hope that it might help others.

 

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This letter is to help explain to one of my friends what Quirky means. Quirky, Autistic, Nerdy, Geeky, Dorky, whatever word you call it by, it means those of us who just aren’t normal. That doesn’t mean that we are wrong, or that our brains aren’t functioning properly, that means that we are divergent when compared to “normal” society. It means while society turns one way, we think about the direction people are going, and decide for ourselves which way we want to go. So many people try to fit in, when they just… Don’t. They fight to be normal, when they could have a happier, more interesting life just being themselves. Because, life isn’t about five pre-determined paths that we choose when we’re sixteen.

Quirkiness is an attribute showing unconventional thinking, and many individualistic traits. Quirkiness is a wide spectrum, spanning from nerds and geeks to Autistics, to those of us who are left out for no reason. I see the parallel between black struggles of the past, and exclusions of Autistics today. As Martin Luther King Jr. said, “We cannot walk alone. And as we walk, we must make the pledge to always march ahead. We cannot turn back.” Even if society pushes us back, we have to keep to our choices of being who we are. Society always forces away those who are different, but the quirky people are often the only ones who can change it.

Autistic people’s brains often operate in very different ways to the so-called ‘normal’ people. They may have a strong interest in one area, and become a whiz at it, devoting their entire interest time to it, for however long that may be, and possibly taking a job in it. Their mind is more focused on their interests than inter-personal relations. (unless of course, the inter-personal relations are their interest.)

Just like anyone else, there are some areas Autistic people are good at, and some that they aren’t. Autism is just another way of thinking, some members of society will consider it bad, but that is because some people just can’t accept quirky. Those who really matter won’t ignore you just because of diagnosis. People who take you for yourself are real friends, if you have to pretend, you are in the wrong group.

Hope that some of this helped, because I know what being quirky is like. It feels like society has got one standard, which everyone else has to match to be accepted. It is hard to navigate, but not impossible, and take it from a fellow quirky that you can play by the rules, but you are more than than just a follower of those rules. You are an individual, and that means more than just a member of society. You’re you. That person is someone that you should explore, and never lose sight of, because that person is unique, and that person is important. And that person is my friend.

 

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Individuality:

‘You are an individual, and that means more than just a member of society. You’re you. That person is someone that you should explore, and never lose sight of, because that person is unique, and that person is important. And that person is my friend.’ Remember this? I didn’t explain this part in particular.

Personally, it took me years to understand what this meant. There were so many times that I would just go and fake an interest to make friends. For years, I had no success at making friends. At some points, it got as serious as rejection. I had to learn. Thankfully I had safe places to both learn social, and actually enjoy time with people outside my family.

And, when I look for a friend, I’m not seeking a mirror. It’s about who they are that counts. And, once I’m friends with someone, it is very hard to break my trust. I’m not sure if this is the case with everyone, but it is with me. And when I ask about interests, it’s only significance is so that I can talk to that person about them. I’ve had true friends before, and we usually just be ourselves, regardless. Different interests or otherwise, we’ve been close friends for long enough that it doesn’t matter.

It’s cool to have your own interests. I’d be happy to hear about some of your favourite TV shows, movies, books, other. I find it great when people recommend stuff to me that I end up liking. I’m sure other people do too. Friends broaden people’s view of life in general, because of their differences. Yeah, some similarities are cool, no-one would get on without them. But so are the unique parts. Unique is important, because that’s you, being you.

There are a lot of different interests out there. A lot of people will consider them cool as well. Art, music, the Internet, butterflies, the Hobbit, just to name a few, there is a whole world of interests out there.

Confidence. You aren’t the only one with confidence issues. I had confidence issues for quite a while. I’m still trying to be as confident as I once was. People are either so overconfident that they get hyper or arrogant, or lack confidence so much that they seem quiet, and uncertain. I started as the former, then grew to the latter. Now I’m in the middle. You just have to find the balance. It takes repeated acts of courage to build confidence. Sometimes, social incidents don’t go well, despite thinking that you’re doing everything right. That’s when it’s a good time to reflect, and problem solve. Problem solving difficult situations is one of the major things that got me this far. When the next interaction goes well, it helps to boost my confidence. I am not saying it’s easy- it isn’t. But it is worth it. The amount of confidence you have can literally change your life.

If you have that dignified, mature, confident aura about you, then even if people don’t like you, they can at least respect you. It shows that you are settled in yourself, and that you won’t be humiliated easily. That you are mature, have experience, and are friendly.

So that’s me wrapping up the benefits of being unique. It is hard sometimes to be the only one in a crowd, and I don’t get the pressure at school- I’ve never been there. I’d say it’s worth it, but each to whatever works for them. Hope that this helps.

Parenting Children on the Spectrum

From the start, she was affectionately known as my “Lap Limpet”.  She is our youngest, a beautiful child with perfect complexion and big brown eyes.  Whereas her older sister had been very active, keen to explore and experience life, this one was content to cuddle.

She did meet her early physical milestones, not with the enthusiasm for mobility that many children demonstrate, but because we had deliberately placed TV remotes, mobile phones and other potentially-motivating technology objects just beyond her reach.

However, she didn’t speak.  She didn’t babble, and she rarely vocalised.  We knew that both her hearing and understanding were good, and my uneasiness increased in pace with her age.

Her lack of speech wasn’t our only area of concern- she often seemed agitated and upset for no discernible reason, and she had some serious tummy troubles.  Despite my extensive research and implementation of various strategies, we realised that we didn’t know how to help Abi.  In a society that greatly values independence, and has high expectations of parents, admitting that you don’t know what to do, is hard.  Add in the harsh judgments of strangers, and it felt crushing.

I remember feeling abandoned by the medical profession in the months after Abi’s diagnosis.  We had hoped that with diagnosis, we could access further supports from the medical community, but with the exception of our Occupational Therapist (OT) and the federally-funded Early Days workshops, we received very little information or guidance.  I read voraciously, only to discover that due to the width of the spectrum, and the boy-bias of the diagnostic criteria, much of what was written wasn’t relevant to Abi.  I learned about the myriad of therapies available, but most of the behaviours they were seeking to address weren’t important to us.

Our highest priorities were her health, sensory issues, communication, and safety- then perhaps some daily living skills.  Nobody functions well if they haven’t had enough sleep, their nutritional intake is inadequate and they have ongoing tummy troubles- and a sensory system constantly teetering on the edge of fight/flight/freeze responses certainly doesn’t help!

It took a lot of time and tenacity, with some very stressful mismatches along the way, to assemble the right team of doctors and therapists for our family.  We’re very thankful to have them working with us.

It was both a relief, and initially a little uncomfortable, to have all these medical professionals in our life.  While it was fantastic to be partnering with people who understood what Abi was experiencing, and could make suitable recommendations, our private family life no longer felt completely private.  Parenting decisions and family routines around mealtimes, sleeping, toileting and outings were discussed with multiple people, strategies were suggested, and results reported back.

At first, the successes seemed small.  I hadn’t realised how many steps were involved in achieving seemingly-simple outcomes.  I am thankful that our therapists took the time to highlight these small successes, and helped me to adjust my perspective, because if I had continued to focus exclusively on the final results, I may have missed seeing Abi’s wonderful progress.

Twelve months after her diagnosis, it was a delight to see our little girl so much calmer and happier.  We loved observing her unrestrained enjoyment when her favourite TV program was shown, watching her speed and intuition when using her iPad, enjoying her sense of humour and teasing, hearing her giggles of glee when we sprinkled her with water in the back yard, firmly grasping her hand to ensure that her enthusiasm didn’t exceed her ability when traversing uneven-terrain bushwalks, and most of all staring into those beautiful big brown eyes as she slowly leaned in for a gentle kiss.

My experience of parenting Abi has been quite dissimilar from my experience of parenting Hannah, and the key difference with raising Abi is that we have not done it alone.

The African proverb, popularised by former US First Lady Hillary Rodham Clinton, is that it takes a village to raise a child.  Abi’s village includes our medical team and the staff at her school, as well as our ever-faithful family and friends.  It’s a concept that’s unusual in modern western culture, but I have found it to be very empowering.  John and I don’t have to do it all.  Even the thought of doing it all is exhausting!  We have people who can suggest strategies, and others who can help to implement them.  We have people we can contact if we’re anxious about any aspect of Abi’s health, development, or education, and people who provide practical and emotional supports.

The people of Abi’s village are very fond of her, and we love seeing the tears of joy in her OT’s eyes as we recount a major success; the broad grin of her Paediatrician as he sees her actively engaging with her Daddy; the sad smile of sympathy as we tell her GP of something she’s struggled with; her teacher’s excitement when sharing the day’s stories; and text messages from family and friends expressing their elation about Abi’s latest accomplishment.

Our close relationship with members of Abi’s village enabled us to make discreet enquiries when we saw several of Hannah’s traits listed in books we were reading about female Autism.  Hannah independently reached the same conclusion, and asked us to arrange diagnosis.

She was approaching adolescence, a time when girls’ relationships change from functional play to social interactions- and she was beginning to feel awkward, and consequently very anxious.  I don’t think our Paediatrician had ever seen such an eager response to a diagnosis before!  Hannah was relieved to know that there was a reason she was different, it wasn’t that she was just “weird”.

Hannah is very proud to be an Aspie (her preferred terminology).  She likes the way her brain works, and her different perspective of the world.  She loves being a “geek girl”, and enjoys connecting with people and groups who share her interests.

After Hannah’s diagnosis, I reflected on her childhood.  Being my firstborn, I thought that my experience of parenting Hannah had been fairly typical, yet I always had a suspicion that I’d missed something obvious in the mythical Parenting-101 class.  Her reactions and responses were often a little unusual, and I wondered how other parents managed to impart this information to their offspring, when I clearly couldn’t.  My reaction to her diagnosis matched hers – relief.  It was great to finally have an explanation, and a way forward.

As with Abi, our highest priorities for Hannah were her health and sensory needs, both of which were quickly addressed.  Hannah wanted to improve her social skills, and it’s been wonderful to see her progress.  She brings questions about specific situations to her OT sessions, and loves learning more about how people interact.  Due to her keen interest in this area, there have been a few occasions recently where Hannah’s social skills have exceeded those of her typically-developing peers.

Many family members and long-term friends have commented about how much more peaceful Hannah now is.  I believe that her diagnosis has helped her to better understand and accept herself, as well as addressing her underlying sensory issues and anxiety.

Autism isn’t a bad word in our house.  If anything, it’s a word which has brought much relief.  Our girls have always been Autistic, but identifying it has enabled us to find better ways to support them.

While the day-to-day detail of parenting children on the spectrum is very different than parenting typically-developing children, my experience is that my general parenting goals are unchanged.  Before my children were diagnosed with Autism, I wanted them to be happy and healthy- and to be the best that they could be.  Autism doesn’t change that.

I don’t know what my children will be interested in or capable of when they’re adults- but neither do most parents of similar-aged children.  I have seen many parents devastated by their child’s diagnosis, because they fear for the future.  I promised myself not to go down that path.  Worry steals peace and strength- I chose to walk forward, one step at a time.

We have now taken many steps on our journey.  We like walking together- a nice, steady amble, often along barely-cleared trails, and occasionally venturing onto the wider laneways.  The route isn’t fixed, although there are destinations we are heading towards.

Amidst the familiar, expected steps, there are also steps I had never thought we’d take, steps I never knew existed, and steps that required significant emotional processing before we proceeded.   I’m less concerned with society’s expectations these days, and a lot more flexible about my own.  Our steps are ordered by considering what’s best for our girls.

It is thrilling to see them thriving!  While Abi still prefers to observe new situations for a while before participating, she no longer clings to me with the quiet desperation that earned her the nickname of “Lap Limpet”.  Hannah has gained so much confidence that she now actively approaches new social situations, with minimal anxiety or after-effects.

John and I are also doing well.  Identifying Autism in our family upended just about everything except our love for each other and our girls- but rethinking our beliefs, plans and expectations, and reaffirming what’s important, is actually a very positive experience, although unsettling at the time.  Parenting children on the spectrum can be quite an isolating experience, as the dominant generational and cultural narratives about parenting often aren’t relevant to us- so we are especially thankful for our “village”, and their ongoing care for our family.  I know that with our love and guidance, and our village’s continued support, our girls will flourish, and become the best that they can be.

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This article was published as a chapter in the recently-released book:
Parenting a Child on the Spectrum.

Copies of this book can be purchased from Authentic Publications.
That’s an affiliate link, which means that if you purchase through that link, I get some commission.

For those who know me personally (I use pseudonyms on the blog and in the book to protect my family’s privacy), or were sent this link by someone who does, I’d be happy to place a wholesale order- contact me if you’re interested.

Hidden rules of Christmas

Judy Endow has written a very useful “hidden curriculum” list, outlining social information that Autistic people may otherwise miss.

Very similar in style to “The Asperkids Secret Book of Social Rules” by Jennifer O’Toole, that my daughter loves!

Respect and privacy

Jess, from A Diary of a Mom blog, has written a fantastic post about respect and privacy.  She encourages parents to seek support, but recommends that this be done privately (eg pm’s, emails, private meetups, therapists, journals etc), not publicly (eg Internet forums).  Children sometimes later find what their parents wrote- which causes much hurt; they have a right to privacy; and Autistic people don’t want to be constantly hearing about how hard they make their loved ones’ lives.  Some of the Autistic adults she quoted, recommended some good forums (and they are good- I’m on all three!) where parents could have questions posted anonymously, to be answered by Autistic people.

Why do I think I’m Autistic?

Why do I think I’m Autistic?, by AutisticHoya.  I love this article!  It’s a very long list of the reasons why she thinks she’s Autistic (beyond having it written on an “official” piece of paper), with detailed examples, and finishes with a great photo of her sticking her face into a giant tassel decoration on drapes in the Green Room of the White House, in stim-heaven.

Sensory at school

M. Kelter (InvisibleStrings blog) talks about his difficulties starting each new school year.  At first he thought it was social, but later realised it was sensory.  After a long holiday at home, where he was acclimatised to the sensory environment, going into a new sensory environment was exhausting and overwhelming, as his mind had to sort though so many new inputs, and it took time (sometimes months) to acclimatise.

Hierarchy of disability

Fighting my internalisation of the hierarchy of disability (CrippledScholar blog).  This post puts into words something that happens, but shouldn’t.

The basic idea behind the hierarchy is the prejudicial idea that disability is equated with being a burden or public nuisance … to maintain higher status a disabled person must not be perceived as either of those things.

 

I still hesitate to publicly label myself because I know that the additional stigma of a DSM diagnosis confirms so much of the deeply held misinformation the nondisabled public has on disability.

Well worth a read!

Sensory seekers and avoiders

A great list of sensory behaviours, both the seekers and the avoiders– and some explanations for how the same person can be seeking and avoiding in different senses or at different times.

Modelling AAC

This Youtube clip, with the rather unwieldy name of “Communication Practices: Non directive language, engineering environments with Erin” is 45 minutes long, and isn’t as scary as its name sounds.  The term “engineering environments” simply means to set up the environment you’re working in for best outcomes, in this case, modelling AAC.  There are some great practical suggestions there, especially for those just starting out with AAC modelling, when it feels quite overwhelming.  I liked the idea of having a duplicate of the child’s AAC on hand for yourself to use, wherever you may be, whether that’s a laminated set of screen captures attached to a handbag strap, or an iron-on piece of cloth in the nappy bag.

Appreciating having Aspergers

The 5 Top Reasons for Appreciating Having Asperger’s, from How To…Autism blog.  The author talks about the best bits he can thank Aspergers for, and his 25-word recap is:

I’m good at something and appreciated for it, I’m not alone when I’m alone, I’m purposeful and get things done and I’m my own person.

The trick is to learn who you are, apply yourself, find you niche and be comfortable in it.