Mansplaining and other Conversation Breakers

Of all of the bad things that men do to women, Mansplaining is the one that terrifies me the most on a personal level. This is because I believe that I'm essentially a good person and I'm in control of myself. I know that I can easily avoid most mistakes but mansplaining is different. 

It's not so simple to avoid and it is something that sneaks up on me. Sometimes I don't realise that I'm doing it until I'm right in the middle of a conversation -- and then I suddenly feel like I want to run away.

Mansplaining is certainly not "an autism spectrum thing" -- it's not even a "man-only" thing. I think however, that being on the spectrum may increase the likelihood of our conversations being interpreted as "mansplaining". I certainly don't mansplain for a "power trip". If and when I do it, it's  usually because I'm so poor at conversation and because I'm partially deaf.

Regardless of the reasons, I'm determined to make this a thing of the past... 

What is Mansplaining?

Although the term is at least three years old, I only became acquainted with it earlier this year when I saw a comedy show doing a skit on it. (You can ask that: Mansplaining) If you do a YouTube search on the term, you'll find plenty of skits. Sometimes having a laugh about something is also the best way to learn something new. I feel that when you're laughing, you're open to new experiences and new understanding.

The videos on YouTube tend to show extreme examples of mansplaining in which there's no doubt that it's happening. It's important to realise however that standard and generally respectful conversations could still be perceived by others as mansplaining because it's not always our behaviour so much as the perception of our behaviour that is important.

There seems to be two major parts to mansplaining;

• Being Condescending
• Interrupting

The worst part of mansplaining is that the person doing the explaining feels that their opinion deserves to be heard more than those being "explained to".  This may be because they feel that theirs is the only correct (or fully correct) answer or because they simply don't have enough respect for the other people in the conversation.

When it comes to interrupting, mansplaining often happens because one person in the conversation "shuts down" or talks over the other. Since male voices tend to be deeper and louder than female voices, it's obviously much easier for a man to do this to a woman than it is the other way around. 

Is this a Sexist Term?

I'd love to be able to say that this is absolutely a sexist term and that being condescending and interrupting others in conversation with the aim of power-tripping or silencing unwanted voices is something that happens with both genders. Unfortunately, the term is what it is and it was coined because it's more commonly a male behaviour directed towards women.

That doesn't mean that women don't "mansplain" -- they do. It's just that usually when a women "mansplains" she's more likely to be doing it for reasons of power over an individual rather than "power over a gender".  The other thing of course is that from childhood, men are conditioned to have their voice heard more than women. Hopefully that's changing now...

In any case, regardless of who is doing it to who, it's not a good behaviour in any conversation.

From: https://thenib.com/mansplaining-explained
(a very informative page, highly recommended).

Being Condescending

These days, I don't feel like I'm condescending but I know for sure that in my youth I was. In my teenage years especially, when, like all teenagers, I felt that I knew everything, I would often explain things to my parents and girlfriend in a condescending way.

It's something I regret and also something that I'm now very careful to avoid. I don't talk down to people. I try to respect them for giving up their time to listen to me.  

Sometimes it's not easy. Sometimes my head starts racing and I'm thinking further ahead or more deeply in a conversation than the person I'm talking to. People with autism do this a lot, especially when a conversation touches on one of their special interests. When that happens, you have only a couple of choices, try to re-explain your thoughts in a slower, simpler manner, or drop the conversation.

These days, I'll mentally ask myself whether or not someone needs to know what I'm telling them (to the level of detail I'm telling it in) and if I think they don't, I'll trail off and end the conversation. If they're truly interested, they'll ask for more detail -- they almost always don't.

Interrupting 

This is by far my biggest problem. I find that I interrupt people for various reasons;

• Not realising that they're still talking: This is 100% my hearing loss problem -- and it does happen much more frequently when I'm talking to women than men due to their softer voices. Sometimes I can stand next to someone and have no idea that they're talking.  I have to watch their mouths to see if they're moving.
  
  Of course, if I can't hear them, I'm not getting much out of the conversation and it's rude to "be there" and not "be listening", so whenever possible, I'll take that as my cue to leave a conversation.

• Not reading body language:
  People with autism often have problems participating in group discussions because they can't always tell when it's their turn to speak. It's such a common problem that it's included in the diagnostic questions of many autism/Asperger's tests. 
  
  When this happens, it's a genuine mistake. To avoid mansplaining, simply stop your conversation, apologise to the person you were talking with "oh I'm sorry, you were talking" and allow them to continue.
  
  A person mansplaining for a "power trip" won't be apologetic and won't stop their conversation to allow others to continue. If you're apologetic, others in your conversation will usually be understanding of your mistake.

• Getting too excited about a topic:
  This is a huge deal for people on the spectrum. You've spent ten minutes hanging on the fringe of an impenetrable conversation when suddenly out of the blue, someone mentions something related to your special interest. Suddenly you have a way in -- and you dive in babbling furiously.
  
  If you're sitting down with a group of people who are mostly excluding you from the conversation, then it's okay to give this one a shot. After all, they're being rude to you too. If you've walked up to a group who is already deep in conversation and you're on the outside, it's less okay, particularly if you have to talk over someone to be noticed.
  
  In these circumstances, it's important to sense the mood of the conversation as best you can. If people start changing the topic, they're obviously not interested in your contribution. It's painful but it's better to walk away.
  
  I've often made a quick getaway in these circumstances by faking a phone call (my phone is always only on vibrate). All you have to do is stiffen, reach for your pocket and put the phone against your ear as quickly as possible so that nobody sees the display … and then walk away from the group saying "hello" or "sorry, it's a bit noisy in here". People will excuse you and you'll be able to make an escape on the pretext of moving to a quieter area.
  
  It's little wonder that people on the spectrum are often referred to as the people who befriend the pets at parties. 
  If you're struggling in groups, you're better off to talk to others who are alone at parties -- or simply not attend. It's better than constantly being rejected by groups or getting a reputation as a person who talks about themselves but never listens.

• Preventing others from talking: This is the key to mansplaining, the idea that your conversation is more important than someone else's. Occasionally there's a good reason for talking over someone, for example to prevent them from saying something that will get themselves or someone else into trouble. Most of the time though the reasons are trivial.
  
  Perhaps they're telling a story wrong or they've left out an important detail. Perhaps they've said that "you" did something that you didn't or they've cited a fact wrong. Whatever it is, they're entitled to finish their conversation. You're not "the boss of them". If you still feel strongly about an issue after they've spoken and you think that it will add to the conversation while not making them feel inferior, then by all means, add your "two cents" at the end.

If there's any chance that your words will hurt. It's best not to say anything. We can all be better conversationalists but only if we think about others when we speak.  

Teaching Teens with Autism about Budgeting

Money is the key to freedom and it's essential that all teens know how to work within the confines of a budget before they reach an age where adult intervention becomes difficult. Don't forget, as new payment methods emerge, physical cash is disappearing and this makes it more difficult for teens to understand how quickly they can go through their funds, or even worse, rack up debt.

For many teens, simply having a good grasp of mathematics is enough but what if your teen is on the autism spectrum. They could be brilliant at maths but it might not translate into the real world -- or they could have learning difficulties. 

How do we get these concepts understood and accepted? How do we make budgeting an automatic part of your teen's spending habits?

Start young

The earlier you start getting your kids to purchase things on their own, the better. With my boys, we were giving them money before they'd even started at school. It wasn't pocket money then but we'd be sitting in a food court and we'd say that he could have a doughnut if he went to get it himself.

We'd give him the exact amount of money (sometimes more) and watch from the table as he toddled off to buy one. Sometimes he'd try to buy a more expensive one. Sometimes he'd have the money for his new choice and sometimes he wouldn't. Occasionally we'd have to bail him out but only after he'd tried his hand at negotiation.

It was also great for his communication skills.  The lady in the doughnut shop was very patient with him (we couldn't have done it in a crowded shop) and she'd often cast a glance in our direction to make sure that we were okay with his choice.

As he got older, we'd tell him to go and decide which doughnut he wanted and them come back and tell us how much he needed. Food was a great motivator.

All kids will benefit from starting young but kids on the spectrum especially will benefit both from interactions with others and from handling real money rather than mathematical concepts.

Operate "Pocket Money" like a workplace

When your kids get older you'll want to give them pocket money. Whether or not you make them work for it is up to you. It's a good idea if you can but sometimes this just doesn't work. One alternative is to give them a "base salary" which they get regardless of whether or not they do work and "bonuses" for doing jobs.  As you increase the amount you're giving them, consider leaving the base as it is and increasing only the bonus part. You might either add more jobs or expect higher standards of cleanliness for the extra money.

We found that money had no effect on our kids until they reached about thirteen years of age. Even then, laziness would often win out against getting more money. The balance has been slowly shifting for a few years now and they're much more likely to complete their household chores.

Even if it looks like it's not working, keep doing it. Eventually it will. 

The other thing we did was make sure that any regular money that our kids had to pay the school was built-in to their "wages".

At first, we'd give them a portion of money every morning in an envelope. It was quite problematic because we'd need to make sure that we had the right amounts of change. The benefit of this was that we could ensure that they had enough money for sports day (when they had to pay extra for buses). As they got older and more responsible with their wallets -- and as it got more difficult to get the right change, we changed to giving them one pay out per week.

Start with simple budgeting and slowly work your way towards more complex choices.

Allow Failures

The budget that you set for your kids should be generous enough to allow for them to pay for lunch (if required), snacks, school activities and a small amount of external spending or saving. You'll want to keep the essentials in the "standard wage zone" and put anything extra in the "bonus zone" so that they don't start the week short -- at least not until they're a little older.

Your kids are going to have failures. They're going to go through times where they spend all of their money on Monday and have to complete the week with nothing. You can't be there to rescue them all the time and you have to let them fail in order for them to learn.

For example, if they have sports activities on Fridays for which they need $10, you might "give them an advance" from the next week's money if they've spent their entire week's money already.  If that happens, make sure that you give them $10 less the following week. If it happens several weeks in a row, you'll want to do one of two things;

• Withhold $10 until the day that it's needed and give it to them.
• Let them attend sports day without the money and let their teachers show them the consequences.

My kids will still stretch things at times especially if they're saving up for something. My youngest will often say, "It's okay, I'll just have starve days for the rest of the week". 

It's okay. Your kids won't starve especially if you have snacks for them when they get home -- and chances are, they'll learn those lessons about spending all their money really quickly. 

I'm particularly proud of my eldest son (now 17) because he's stopped buying lunch at school and has started preparing for his week by purchasing from the supermarket. This not only leaves him with more money for other things it has also had the side effect of getting him to plan out his week. 

Kids on the autism spectrum often struggle with executive functioning so planning for the week represents a major step forward. 

Don't forget, this is their choice, not yours. If you keep rescuing them, they'll never learn. 

Encourage Saving

Sit down with your kids and explain how they can save their money for a few weeks to buy something that they really want later. If your kids struggle with the maths, consider demonstrating with actual money by putting it into piles on the table. 

Having shopping catalogues handy will help this process as you'll be able to show them different items with marked prices and say that "this item is three weeks of saving, while this one is five weeks". Catalogues also make it easy for your kids to learn about shopping for a better deal and how prices change during sales. 

Dealing with the Abstract

Kids on the spectrum often take longer than their peers to deal with abstract concepts such as credit or money that they can't hold. These are important concepts though and they need to get exposure to banks including fees and interest -- and most importantly to cards and credit because at some point in their lifetime, chances are that cash will be gone forever.

It's probably best to start your kids off with a bank account and perhaps a withdrawal only card. From here, the best way to get them used to cards is to provide them with store bought cards, such as those from iTunes, Steam, Google Play or department stores.  You can even buy Visa debit cards.

When your teen is a little older and has been able to demonstrate a reasonable amount of self-control over their store cards, you might consider adjusting their bank account to use a debit card.

I'd avoid a credit card for as long as you can but it's important to remember that you need to have "socialised them" with these cards before they reach an age where they can arrange these things without your help. 

Widen your Teens' Exposure

Once your teen is successfully dealing with their weekly budget you'll want to widen their exposure to finance. This means that you'll want to show them newspapers or store fronts which have televisions, game consoles, cars and eventually houses in them. It's important that they get an understanding of how much things cost and how not everything can be saved up for. Some things have to be bought and paid off.

You'll need to explain the concept of interest to them as well as how some places will have hidden fees.

Your kids are going to get ripped off at some point too. There's no doubt about that.  Sometimes you'll want to let them simply learn from the experience. For example, they'll need to learn to read reviews before buying online and they'll need to learn to choose reputable sellers.

At other times, people will simply take advantage of them and this will lead directly into consumer rights. You'll need to go with your teens when they return items and you'll probably need to take the lead on the first few occasions but eventually you'll be able to hang back from a distance and watch them negotiate their way to a refund. It's very much like an adult version of the doughnut store experience I described earlier.

If you go travelling anywhere, particularly where there are multiple foreign currencies being used, this is a great time to talk about exchange rates and to have your teens tell you whether something is cheaper in one country or another.  It's okay if they use an app on their phone to help.  It's not the maths that's important, it's the concept.

Help your Teen to Save

When your teen finally leaves school, you'll need to encourage them to start earning for themselves. One of the best ways to do this is to cut funding. 

If they don't have a job and they're not on unemployment benefits, you obviously can't charge them board for staying at your house. You can however significantly reduce the amount of available snacks and/or services.

Most modern game consoles need internet to work, so if your teen starts to become a couch potato, removing the internet and TV subscription services may be enough to get them to start taking control of their lives. It's tough love but sometimes it's necessary.

If your teen does have a job, you should charge board. Don't feel guilty about this. It's for their benefit.

Of course, you don't have to keep the board money. You'll most likely be using it to provide for their needs anyway as teenagers can "eat you out of house and home".  Even better you could save for a family holiday or special occasions such as Christmas, special birthdays, weddings or even a first home.

Of course, it's best not to let your kids know if you're doing anything like this for them -- after all, their future landlords certainly won't be doing anything like that.  It's all tough love but it's well worth the effort. 

Autistic Burnout - Causes and Prevention

In some of my other posts, I've talked about meltdowns, which are when people on the autism spectrum lose control. I've also talked about the quieter form of meltdown; the "shutdown" where an individual is unable to connect with the outside world. 

Meltdowns and shutdowns are transitory things, they happen and they pass. They're also usually quite short, lasting at most, for a few hours.

When a person with autism experiences a condition similar to a shutdown that lasts for days or even for the rest of their life, it's something else.  It's called autistic burnout. 

The symptoms

The symptoms of autistic burnout will vary significantly from person to person but there are a few common signs;

Inability to cope with daily life

Autistic burnout is often compared with a mental breakdown for good reason. They're very similar. A person may be coping well with the pressures of family or working life and then may suddenly become incapable of continuing. This may mean that they're incapable of leaving the house, going to work or doing even the simplest of tasks.

A person going through autistic burnout may find it impossible to engage with anyone but their closest and most understanding friends and family. Even then, they may find that they can't interact for long. Activities that they once loved, such as reading or even watching television or playing computer games may simply be too much effort for them.

Regression

In younger children, autistic burnout can lead to a regression of abilities. A child who is toilet trained may regress to the point where they are no longer able to use the toilet. Similarly, a child who has reasonable language development for their age may regress to a point where they lose speech entirely.  Autistic burnout at a young age may be one of the reasons that immunisation was once suspected as being a cause of autism.

The Causes 

Autistic burnout is generally caused by someone trying to do more than they're physically or mentally able to.  By constantly overstretching themselves, people with autism can push themselves to the limit -- and beyond. 

It's something that could happen to anyone but people with autism are particularly prone to the issue for a number of reasons;

Go Hard or Go Home

One of the traits that people with autism have, particularly when it comes to their special interests, is that they don't know when to stop. It's quite common for people with autism to work to the point where they injure themselves because they attempt to overachieve. They'll commit to achieving major amounts of work in a short space of time (and they'll hit those targets) or they'll master a new skill in an incredibly short period of time by cutting out other essential activities such as eating or sleeping.

Sensory Issues

Most people with autism have at least a few sensory issues. Some don't like touch, some are sensitive to smells, others have difficulty with sounds or taste. Many people with autism are sensitive to several senses at once which makes daily life a struggle.  It means that things that take little effort from other people often require a much greater effort from them.

Anxiety

Anxiety is arguably the most common of the autistic traits. People with autism battle many forms of anxiety daily; these can include social anxiety, separation anxiety, change anxiety, general anxiety or specific forms of anxiety such as obsessive compulsive disorder, post traumatic stress disorder, panic disorder or phobias including agoraphobia. Navigating life with these anxieties is difficult and stressful -- and it takes a toll on the individual.

Pretending to be "normal"

People usually expect others to behave "normally". This is particularly the case in the workplace. Pretending to be normal involves suppressing your natural urges and responses and trying to fit in.

It means that at times, you need to push your anxiety deep down and do the things that make you anxious without appearing anxious. It means that if a colleague comes up and touches you, and you have issues with touch, you need to suppress any reactions you might have. The same goes for changes in the workplace. Pretending to be normal is an exhausting process and people with autism often need to seek some time-out before they can rejoin the fray.

Lack of Downtime

People with autism tend to exhaust themselves in interactions with others but can regain some of their capabilities with a little alone-time. Sometimes that alone-time is in a room by themselves and sometimes it takes the form of a walk or other exercise where they're cut off from the rest of the world. 

Some of the recent changes in workplace practices, particularly "lunch and learn" where employees are expected to bring their lunch to meetings instead of seeking lunchtime solitude can really play havoc with this downtime.

Other changes in the workplace include longer working hours and "always-on" contactability via mobile calls, emails on the go and video meetings via technologies such as Skype and FaceTime make downtime difficult to maintain.

Downtime is critical to continued functioning

Prevention and Living on the Edge

Autistic burnout can take a person with autism out of the workplace (or away from their family) for a week, a month, for years or even permanently. It's something that needs to be avoided at all costs. It's very much a case of prevention being much better than a cure.

People with autism need to be aware of the risks of autistic burnout and the things that they need to do to reduce the chances of it happening to them. Here's a few do's and don'ts to get you  started;

• Don't try to be "normal", be yourself and let people accept who you are.
• Don't climb too high on the corporate ladder at work; the higher you are the more people interactions you need to have.
• Don't let work push you into constant contact or constant meetings. Everyone is entitled to breaks; it's the law.

• Do be mindful when you're head and shoulders above the rest, chances are that you're putting too much effort into something.
• Do educate yourself (and your colleagues) on spoon theory. It's a great way to illustrate to your friends and colleagues how effort can leave you depleted.
• Do accept help (and do delegate tasks) at home and at work. Sure, people won't meet your standards of "perfection" but you won't burn out either. 
• Do be aware of sensory challenges around you and take steps (eg: earphones) to reduce their impact on you. 

If you're already affected by autistic burnout. You really need to seek some assistance to get back on your feet. It's not something that you can do alone. 

When should parents stop pushing their children with Asperger's syndrome?

If you're the parent of a young adult with Asperger's syndrome you'll be very familiar with the need to keep educating and pushing your child. You'll probably be an expert at it and you'll most certainly be very tired of all the work involved. 

The question is; should you continue to push your young adults past their twenties or should you back off and allow them to find their own way forward?

We Never Stop Pushing 

Regardless of whether or not we should give our kids more space, one thing is clear.  As parents, we never stop caring for our children and their future. We simply can't help ourselves - and that's okay.

It's okay that we're always concerned for their welfare and that we want what's best for them but there are big differences between trying to help and trying to control.  We need to make sure that we stay on the right side of the line.

The Impetus to Move

One of the biggest areas of contention between parents and young adults on the spectrum is the impetus to move.

Left unchecked, many adults on the spectrum will retreat into the world of their special interests, particularly if they're television or computer game related.  There's not a lot that you can do about this but at the very least, you should not make it a "free ride".

All life decisions have consequences and everyone needs to be able to support themselves. If your young adult is living with you, they should be paying board. It could be coming out of their wages or out of entitlements or benefits they receive. 

Of course we all care about our kids and we don't want to charge them for living with us but board is an important part of growing up and learning money management.

You can use that money to support them in other ways, such as saving it for special occasions, holidays or gifts.  For added incentive, you might also want to tie board into real world consequences. For example, if they don't pay board one week, you might not buy their favourite snacks, or there may be no internet.

If you do take board from their benefits, you can give them "jobs" around the house and pay them for the work. This allow them to earn back money that they need while contributing towards the good of the household.

Either way, getting them off their devices for a short while and contributing to family life is a worthwhile goal that will prepare them for the challenges of the future. 

Computer Slobs

While we're on the subject of retreating to the computer room, it's important to make the distinction between "gaming for fun" and "living with gaming". As a parent, you need to assess the mess and if necessary "ban food from the computer/games room".  Meals should never be eaten in front of the computer and preferably should be eaten around the table with the entire family present to encourage conversation.

All mess around the computer or games areas should be cleared away by the end of the day.

Do not enable the computer slob scenario. Remember, you have the power to "evict your tenant" for poor cleanliness if you need to -- and sometimes these things need to be done for their own personal growth. 

Sometimes you have to accept that your child has limitations but you can never accept violent or abusive behaviour from them.  They need to respect you and the home at all times and this includes keeping it tidy and being respectful in the way that they talk to you.

Education and Social opportunities 

The other thing that parents need to provide for their kids is continuing exposure to social opportunities.  This means that your stay at home twenty-something son or daughter needs to be helping you with the shopping or going out with you or otherwise engaging in activities that will expose them to others.

It's okay to leave your adult kids at home regularly but if they're not leaving the house at all, then you need to take them with you a few times per week. If you have a particularly unmotivated person living with you, then taking them to a gym class, a movie or just a dinner out will help with positive change.

In the natural order, children outlive their parents, so they need to make friends with people their own age.

Hand-in-hand with social opportunities comes continuing social education. You need to be able to say, "that person was showing interest in you" or "let's try dressing up for tonight's outing" or "here's the money, can you go and order our food". With each social interaction comes learning and self confidence.

You might want to encourage your kids to reconnect with school friends or to visit special interest groups to meet similar individuals. The "meetup" app/site is particularly good for this.  There are Asperger's groups in most cities too, so it's worth taking the trouble to find them.

There's also online education to consider. If you have an older kid at home, consider getting them some online course - especially if they're into computers. These courses provide a means of getting certificates which may increase their chances of getting a job -- or at least open other avenues of interest.

Acceptance and Letting go 

When all is said and done though, the old adage comes to mind; "You can lead a horse to water but you can't make it drink". That's true of our kids.  We can expose them to as many social activities as we want but if they can't or won't engage, then we're just pushing them into uncomfortable situations and increasing family tension.

Sometimes you just have to accept that they've moved as far as they can in a particular direction and that the next steps are up to them.

Push.... but not too hard. Make sure that home is always a place where they can go to relax without being judged. 

A Mother's Day Poem

My Parents; Bill and Doris holding me
at Hornsby Heights, NSW 1969

Today is Mother's Day in Australia and apart from presents and food, one of the traditions I have is to put a bit of effort into the card that I give my mother. Often they're hand-made but even when they're not, they usually have a poem inside. They're always intended to be funny because my mother has the best laugh in the world. 

I'm not a brilliant poet and like my blog posts, I don't spend much time editing my work. I prefer things to be original.  As such, there's probably only 10 minutes of work in here - so don't expect Shakespeare.

My mother and I with my sister Maree.

A Mother's Day Poem

Thank you for being there for me,
T'was not an easy thing to be.

When to the shops you would go,
My eiderdown would be in tow

My hands would wander to every shelf
Especially glass - I couldn't help myself

And when I sneeze everything was game.
My sleeves would never be the same.

And then you'd cook and I would scowl,
She looked at it. I can't eat it now.

Then Sunday came and we'd go to mass
The embarrassing altar boy, What an ass

And if I missed my Doctor Who.
You'd have to deal with tantrums too.

When I was angry, I'd just disappear
and leave you paralyzed with fear.

I'd come home with tales of snakes
and bombs and bees, for goodness sakes.

But I survived, you did so well
Dear mother, you were my angel.

I'm here because of all you did.
Yes I am, your cow of a kid.

The Explanation

I wrote this poem intending to just cover a few of the things that I made my poor mother put up with. There were so many more to choose from because I was quite a trying child. It was only when I read it back that I realised how you could almost diagnose autism straight from the poem.

Pretty much all of the verses have a connection to autism in some way but for the sake of brevity, I'll be skipping a few of them.

My eiderdown would be in tow

This was a reference to my security blanket which I held onto for far, far longer than most kids. In my early days, it would need to come to the shops with us but eventually it just lived on my bed. I would fret mightily if it was in the wash and there were major tears whenever it got worn out and had to be disposed of. It was reclaimed from the bin on several occasions. Eventually I had a whole "security blanket family", each with names -- so that when one blanked was unavailable, two could take its place.

It's well documented that kids with autism often form attachments to objects and having security blankets and a bed full of stuffed animals is quite common, well into the teenage years. 

My Parents at my University Graduation

"She looked at It"

As a child, I had major issues with food texture and taste. At that young age, I couldn't understand it myself, so of course, there was no way that I was going to be able to explain it to anyone else.

I'd be happily eating away when suddenly I'd hit something that created a texture problem for me. Suddenly I'd feel like I wanted to gag. Certainly I wouldn't be able to eat anything else. A good example of this was rice bubbles or coco pops which we'd have for breakfast. They're crispy and wonderful when you first put milk on them but as you eat them, the milk soaks into the lower ones in the bowl and they become soggy. That creates a totally different texture.

Since I couldn't explain the reason why my food suddenly when "bad" when nobody had gone near it, I decided that it was because someone, usually my poor sister, had "looked at it".  It got so bad that my mother would tell her not to look at me or she'd put the cereal box between us.  Eventually the problem stopped ... because I started skipping breakfast.

Doctor Who

This is my lifelong special interest and luckily the show is still going 56 years after it started. I started watching aged four and I very quickly became obsessed. In the days before video recording, if you missed a show, it was gone. So of course, I would be desperate not to miss it.

Being young and mostly unaware of the passage of time, this mean't that from Sunday morning, I'd begin to obsess and worry about missing that 6.30pm timeslot. If we were out somewhere, I'd be fretting and wanting to go home before lunch.

... and of course, if I missed an episode, it was as if the world had collapsed.

My Mother, amused by my lack of hair
when I returned from my honeymoon in 1997.

Disappearing Acts

My main response to any kind of strong emotions was to disappear. While many kids simply hide out in their rooms (and I did spend a bit of time in the closet), the main thing that I used to do was disappear down the bush for hours without telling anyone. Going by myself meant that I had a lot of adventures with Australian wildlife and it's a wonder I wasn't seriously bitten, stung or otherwise harmed.

It used to drive my poor mother mad with worry.

Being a "Cow of a Kid"

That last line is just a reference to my mother's favourite trite phrase. She would say "you're a cow of a kid" whenever she was annoyed with me (which was often). Being deaf, I often wondered if I was hearing it wrong but no... that's it. I've never heard anyone else use the phrase and it's certainly a more pleasant turn of phrase than I've heard from other parents. 

Thanks for being such a great mum. 

Adjusting Society to Meet the Needs of People with Autism

As we wind down April, the month of "light it up blue", "autism awareness" and "autism acceptance", I wanted to ponder the other side of the equation. At the beginning of the month, I talked about how those of us on the spectrum needed to represent ourselves. Now I want to look at what we really need from people who aren't on the spectrum. 

As usual, the best way to answer that question is to pick a group which already has good accommodations and look at how this could apply to autism.

Beyond Acceptance, the example of the blind. 

My comparison point this time is blind people. I'm not suggesting that nothing more can be done for them but rather that their needs are understood and catered for well beyond simple "acceptance". Our social care of visually impaired people is impressive and something that other groups should strive to match.

So, how are the visually impaired being looked after by society?

• Braille: It's not just that braille exists, which is a great thing in itself, it's that people know what braille is and who it is for.  That's a significant amount of awareness beyond simply "people are blind"
• Street crossings: In Australia, it's pretty much impossible to find a street crossing without the noises for blind people. It's been here for decades and it's very impressive.
• Bumps on the pavement: These started appearing decades ago and I thought they were just non-slip surfaces. It was only fairly recently that I understood what they were really for - and since then, I've seen many blind people taking advantage of them. I'm proud that the councils in our cities had the foresight to put these things in place.
• Canes and Dogs: I've found that people are generally quite aware of blind people and I've observed that they'll usually leave them alone if they have a dog or a cane but that if anyone sees a blind person having difficulty, they'll often rush in and help. I've also observed that most people are enlightened enough to know not to touch guide dogs. 

The important things here are that people with visual impairments have progressed beyond simple concepts of awareness and acceptance and now have real-world adjustments for their difficulties integrated into our social and building codes. That's what we need to strive for in all forms of social difference.

Adjusting for Autism

How can we adjust our world to be easier for those with autism without necessarily making it difficult for those without?  Here's a few examples which are admittedly mostly geared towards shopping malls but which could be tailored for other purposes too;

Clothes without tags

Tags are a constant source of irritation for a lot of kids with autism. They're scratchy against the skin and even when you cut them off, it's often hard to get the whole tag and you end up left with a scratchy burr.

I've noticed a trend on some T-Shirts recently where the tags are actually "printed" onto the shirt. Similarly, some shirts have the tags on the outside, on the cuffs or sleeves.  This is something that Jeans have been doing for years with tags being on the belt or back pocket.

Clothing without tags is a trend that should be encouraged and recognised as autism-friendly / spd friendly. 

Foods without mixtures

I have a seventeen year old at home whose only available McDonalds foods are fries and chicken nuggets without sauce.  He won't eat burgers because the foods are all touching and because the sauces and mayonnaise affect the texture badly. You can imagine how difficult it is to find suitable foods when we visit a food court and more often than not, I cheat and get McDonalds because I know it's something that will work. 

It shouldn't be too difficult for food places to add one or two plain foods to their lineups, to sell foods with sauces separated or to provide plates in which foods don't touch. 

Special Rooms

A Quiet Room

One of the biggest issues experienced by people with autism, particularly children and young adults is the lack of places to go when a meltdown is beginning. Meltdowns tend to come on suddenly but there are usually enough warning signs that some of the more aware people with autism (and/or their carers) can read them.

If the signs of an impending meltdown are present, one of the most important things to do is to get the person disengaged from sensory overload. Having a quiet or private place to go is often the best option.

Unfortunately, in crowded shopping centres, the nearest equivalents of these quiet places are toilets and change rooms which are anything but quiet. Having a special area set aside for calming down could be something that a lot of people could benefit from. To make the room particularly special, care should be taken with the lighting to ensure that it doesn't flicker (no fluorescent bulbs) and smells (no perfumery etc).

Even just having a fenced-in outside balcony area with seats but not eating tables would be calming.

Lego areas

Similar to my comments on special rooms, most children's play areas are simply too noisy for many kids on the spectrum. One really good alternative would be to have play area at one end of a shopping centre and a lego room at the opposite end.  This would stop kids from taking the bricks out to the general play area and would keep the noise down.

Many kids and young adults with autism would happily settle down and de-stress in lego rooms and these rooms would suit a lot of other types of people, particularly introverts. 

Free Sessions on Autism for Parents and Teachers

Autism education is quite expensive and difficult to come by.  The expense of the experts, venues and travel often puts it out of reach of the carers, parents, teachers and workers who need it the most. Having regular short local volunteer sessions covering specific aspects autism and other differences would increase the general levels of awareness and capability among these groups without breaking the time or financial budgets of those who need to attend.

Many communities already have people on the spectrum who would be willing to give a little time to talk about their differences and of course, there must be local specialists around who would be willing to do a little pro-bono work to make positive changes in society.

Instead of inviting people from around the world and hosting in expensive facilities, communities need to look inwards at their local resources and cover costs with a little sponsorship in order to provide support to those who need it most. 

Checkups, Advice and Talking Centres

I've noticed is that a lot of people with autism are lonely and need someone who understands them to talk to them without being judgemental.  This is also true of people with advanced age, depression and other issues. If you're thinking of suicide, you can always call a lifeline service but unless it's life-threatening, people with general depression or conversational issues have nowhere to go.

I'd like to see communities providing volunteers to visit people in their homes or in neutral places, check up on them and talk to them. I'm not referring to a full medical checkup, I'm talking about asking "how is your day going" or "do you have anything that you need help with".

This sort of thing would be good for people who have problems with paperwork or who need to call a professional, such as a plumber or handyman but don't know who to call.

There's a reason why couples tend to live longer than single people. It's because they have someone to listen to them, to offer advice and support.

Community Awareness campaigns

It feels strange to be writing "community awareness" here when I'm always complaining about the awareness campaigns, particularly "light it up blue".  

I'd like to see community awareness campaigns that don't ask for money but instead teach people how they can give help to those who need it. 

Good examples, in slogan form, for this could be;

• "If it feels uncomfortable, you don't need to make eye contact" #autism
• "If a person with autism is having a meltdown, give them some space to calm down" 
• "Your perfume smells nice, but it can cause sensory issues for kids with autism"
• "Not being understood? Try saying it a different way" #autism
• "fluorescent lights flicker -- and this can cause sensory issues for kids with autism"
• "Everyone with autism is different. The way you help needs to be different too"

Each of these lines teaches the reader something about autism. That's certainly more than "light it up blue" ever did. 

There's a lot that we can do for people with autism but lets leave the whole acceptance thing behind us for now. Let's aim for the kind of changes that the blind community have seen. Positive and lasting changes that are fully integrated into society. 

Autism Representation and the Road Ahead

Over the years, April has been associated with the "Light it up Blue" campaign launched by the group "Autism Speaks". The campaign originally advocated awareness and then acceptance.  

It's something that I've posted about more than once before on this blog.  

• Autism Politics: Puzzle Pieces and Rainbows - March 2012
• How to do More for Families with Autism than just being "Aware" of it - April 2014
• Doing Better than Light it up Blue - April 2017

In recent years, the campaign has changed from something that people with autism were wary of to a cause that is actually opposed by the majority of them.

Autism Doesn't "Speak"

There are many reasons for this shift but in my opinion, the fact that "autism speaks" is entirely controlled by people without autism is probably the major factor.

It's not that they've never had people with autism on their board; they've had some famous people including John Elder Robison. 

It's that they have their own agenda and it's neither friendly nor tolerant to people with autism.

Autism speaks seems to have a few main aims;

• To generate revenue  
• To seek a cure 
• To seek prevention  
• To ease the burden on families  

These may seem like good aims but they're not really compatible with the idea of acceptance.

It stands to reason that if you're putting so much effort into "fixing" people or on preventing the birth of others like them, you can't possibly be accepting them who they are.

The Road Forward  

I don't think that the road forward has changed much but the vision has certainly become clearer in recent years due in part to acceptance movements in other groups.

In order to properly "accept" autism we need to first acknowledge the individual. We need to accept that there are so many incredible differences between people at different points on the autism spectrum and acknowledge that the neurotypical definitions of success or happiness aren't necessarily the same

It's similar to the "when one door closes, another opens" moment that many parents go through except that it needs to happen on a much larger scale.

The Milestones Problem  

In today's world, we're driven by our need to fit into social milestones;

1. School  
2. College  
3. Work  
4. Marriage  
5. House 
6. Kids 
7. Grandkids  

We're so driven by these milestones that it's hard to remember that not everyone wants or needs the same list. 

Even within the list of milestones there are hundreds of mini-lists, one of the most obvious of which are the developmental milestones of our children which set specific ages for walking, talking and toileting.

A failure at any point in the milestones can become a catastrophic failure in your life that leads down the road to depression.

This is what we need to change in order to move forward, the perception that the milestones are the same for everyone. 

It's not simply the culture of autism, it's everywhere.

When we see a disabled person, we find ourselves talking in terms of what they cannot achieve rather than what they can. All of our efforts are directed towards making them "normal" rather than accepting and welcoming them as they are.

The Importance of Representation  

A few months ago I saw an article on the board of directors for a women's rights group.  I was deeply offended by the fact that all but one was male.

For me, the problem was obvious; what could those who haven't fully experienced the issues  possibly contribute that would make them a better candidate than those who have?

This is precisely the same issue as the autism groups whose boards are staffed by neurotypicals.  It's fine to have a few parents of individuals with autism on the board but if we're really interested in acceptance, the board needs to be made up of individuals from all areas of the spectrum.

Now you might think that nobody on the lower end of the spectrum is going to be suitable for a position on the board but the real question is whether or not the structure of a board is suitable for people with autism.  

Individuals with low communication abilities aren't necessarily incapable of communication.  They're simply differently-abled. They're often able to communicate their wants and needs  - and these can be generalized to others with similar experiences.

You shouldn't need to be able to sit in a board meeting in order to contribute as a board member. Technology has levelled the playing field and there's no reason why people can't join meetings via phones, computers, instant messaging or any other means.

The time has come to end the idea of an equally-abled, equally-gendered and equally-minded board that sits around a table disconnected from real-life making decisions that affect the lives of people unlike themselves.

The road forward is to recognise the diversity of people on the autism spectrum and to put them in control of their own agenda.