Thursday, April 25, 2019

Why Autistic People need to be Encouraged to "Give things a Go"

If you're the parent of a child with autism or if you work with an autistic individual, you'll often find that they're very resistant to trying new things, even if they seem to be very safe or "easy" to you. 

In this post, I want to look at why people with autism are so resistant to trying new things and why it's important to keep trying to push the barriers. The strategies that you use to push the barriers are important too and it's critical that you know when to back off and when to add a little push. 

Fear of Failure

We all have a fear of failure. Sometimes it's a very real fear of injury or embarrassment but sometimes it's just the fear of failure itself. Many people on the autism spectrum try very hard to achieve "perfection" in their lives and what might seem a simple failure to most people can become a very big deal to them.

Some people with autism torture will themselves for decades with thoughts and regrets of "failures" which others have long since forgotten. 

There's also the issues of bullying that arise from failure. People with autism are frequently victims of bullying and any public failures on their part are often remembered, or worse, filmed, by bullies for later "torture". These threats are very real.

Increased Chances of Failure (Sensory)

In some ways, people with autism may have an increased likelihood of failure when attempting something new because of their sensory issues and their low muscle tone. If a new activity relies upon strength or some other aspect of physicality, then the hyper-flexibility that some autistic individuals have can lead to easy injury as limbs bend further than they should.

If the new activity involves a lot of sensory data, including heights, problem noises or vibrations and touch, their sensory issues can make it more challenging and thus increase the likelihood of failure.

With pressure like this, it's little wonder that so many people on the spectrum simply choose not to participate.

Take a logical approach

While it's tempting to simply "not participate", this isn't really possible in our society and even when it is possible, it's not a very healthy approach. We need to work hard to get ourselves, our children and our friends on the spectrum to expand their horizons and to try new things.

The best way to do this is to take a logical approach because people on the spectrum tend to be a little more logical than most and often respond well to reasoned arguments.

These are some of the questions that need to be asked;

  1. Will doing this activity benefit me? 
  2. What are the risks? Are they excessive? Are they likely?
  3. What are the consequences of failure?
  4. What parts of the activity do I fear (all? some?)
  5. What steps can I take to remove or reduce the fear issues?
  6. What happens if I don't do this?



Reject Overly Risky Activities

You'll find that if you follow this checklist, it will be easy to reject an overly risky activity.
For example; Bungee Jumping
  1. Will doing this activity benefit me?
    Unlikely
  2. What are the risks? Are they excessive? Are they likely? 
    Very high risk but low likelihood of accident (unless it's at an unsafe site).
  3. What are the consequences of failure?
    Death.
  4. What parts of the activity do I fear (all? some?)
    Heights
  5. What steps can I take to remove or reduce the fear issues?
    Nothing - Bungee Jumping is all about heights.
  6. What happens if I don't do this?
    Nothing
It's very clear that bungee jumping is a risky activity that provides no benefits and no consequences. If you want to do it, it's fine but if you don't want to do it, you really shouldn't feel obligated to.

Accept Necessary or Beneficial Activities

Similarly, the checklist will help you to identify activities that are beneficial to you, for example, learning to drive a forklift if you work in a warehouse.
  1. Will doing this activity benefit me?
    Yes, because I will be able to apply for a promotion and/or different duties.
  2. What are the risks? Are they excessive? Are they likely?
    Crashing, possible injury. They're not excessive but there's a reasonable likelihood (at least until you become proficient). 
  3. What are the consequences of failure?
    Most likely some broken pallets or damaged goods. Work will generally accept this.
  4. What parts of the activity do I fear (all? some?)
    Going fast and moving very large loads.
  5. What steps can I take to remove or reduce the fear issues?
    Keep to a slow speed and only lift small items until you feel confident.
  6. What happens if I don't do this?
    Depending on the job, you may not be able to work or you may not be able to advance. 
In this case, the risks are somewhat lower, though they're also more likely.  There's a clear benefit to the activity and consequences if you don't do it.  You've got ways to reduce your stress when learning the activity, so it's a worthwhile pursuit. 


Remove the consequences

In order to make an activity appear less threatening, you need to look at removing or reducing the consequences. For example, instead of a "test" being about whether or not you get a promotion at work, you need to be doing the test merely for your own satisfaction.

If the test is something that is normally done in front of peers or colleagues, then talk to your supervisor or teacher about whether or not you can "have a go" without being watched by all of those people.  It probably won't count as the "final result" but it will allow you to fail or succeed on your own terms without having to worry about onlookers or mockery from others. 

If you succeed, then you'll gain a lot of confidence. Hopefully enough to repeat the "test" in front of others if required. 

Push yourself, gently

In order to do anything new, you need to push yourself just a little into your "anxiety zone". You'll usually know how hard you can push yourself, but the aim is to take on a little bit of discomfort, not to trigger a full-scale meltdown.

You always need to have a meltdown plan in place, in case your anxiety levels get the better of you. For most things, this will simply be "stop" if it gets too much. If you can find someone who is familiar with autism and will support you if you need to stop or take a break, this is better. If not, make sure that your supervisor or teacher knows that you're stepping outside of your comfort zone and that you might not be able to complete the activity.

It's always easier to back down if you have someone on your side who understands your situation. 

Learn from mistakes

Your forays into new territory won't always be successful. In fact, there's every chance that you'll end up with a few spectacular failures along the way. You need to anticipate these and accept them for what they are.

Every failure is an opportunity for learning. 


Failures aren't necessarily a reason to give up. Sometimes, they're a reason for you to reassess a situation and think about what you could do better or differently. Sometimes, they're a sign that more preparation is needed or that additional supports are required.

Most of all, failures need to be recognised as a mark of pride, an indication that you attempted to do something that was incredibly difficult and outside of your comfort zone. Give yourself some credit for trying. 

Failures shouldn't become barriers and you shouldn't torture yourself by overthinking them. Just decide if and when you're ready to give it another shot and what you need in order to be more effective next time.

Celebrate your successes

Surprisingly, success isn't quite as important as failure. When you succeed at something, it simply works and you can give yourself a pat on the back. You don't learn nearly as much as you do from a failure. 

Nevertheless, celebrate your successes. Every little success means that you've clawed back a little of the ground on which people say "you can't do that". 

Remember; there's no such thing as can't.  There's only "not yet". You can do things on your own terms when you're ready. 

Sunday, April 14, 2019

Are we "all a little bit Autistic"?

It's a phrase which seems to really infuriate a lot of members of the autism community, "we're all a little bit autistic" and yet, there's perhaps some truth to it.  In this post, we look at what it really means, where the dividing lines are and why it can be considered offensive. 

The Autism Diagnosis

Autism is diagnosed based on a specific set of criteria from the DSM, currently version 5. You can read this criteria in its correct form all over the web and you really should follow this. In fact, you should be diagnosed by an expert.


In a "nutshell" though, autism is defined by the following;

A Communications issues;
Reductions in; back & forth conversation, eye contact, emotional communication, non-verbal communication, understanding of relationships, capability to make friends.

B Behavioural issues;
Stimming movements, echolia, resistance to change, fixed all-consuming special interests, sensory issues.

C Removing Misdiagnosis
To make sure that the right things are being diagnosed, the symptoms must;

  • Be present from an early age
  • Cause significant social impairment 
  • Not be explained by other disabilities. 

Essentially, if you have all of A and all of B and these pass the test of C, then you have autism. If you don't have all of these or if you fail the test of C, then you don't. 

Clearly we're NOT "all a little bit autistic" because you either ARE or you AREN'T. 

What People Really Mean

When people say that we're all a little bit autistic, what they really mean is that they have some of the communication issues of A or the behavioural issues of B. They generally won't have ALL of the symptoms and they won't pass the misdiagnosis tests of C.

What they're really trying to say is that everyone shares some of the traits of autism -- and that at least is true. 

The most common symptoms that non-autistic people have are;

  • Restricted and Special Interests
  • Restricted communications abilities
  • Echolia
  • Resistance to change
  • Sensory issues
Even when people have similar traits, it doesn't follow that these traits affect them to the same extent as those same traits affect people with autism. 

Lets have a closer look at some of those "shared traits".



Restricted and special interests

This trait is particularly common among of science geeks and history buffs who become so engrossed in their areas of expertise that they can talk about nothing else. It's also common to sportsmen, gamers, movie and television fandom and computer geeks. 

Many people have the odd obsession or two but people who aren't on the spectrum don't wake up and start thinking about their special interests all day. They're often not driven to obsessively collect and constantly reorganise objects relating to their interests and they don't find it almost impossible to shut those interests off when they need to do something else.

In my case, one of my driving interests is Doctor Who -- and it has been an obsession for 45 years. It's 8am on a Sunday morning as I write this, sitting in my Doctor Who pyjamas (one of several sets).  Yesterday I watched two episodes of Doctor Who and listened to another couple of audio episodes while I was hanging out the washing and doing the shopping. The topic will also have come up more than once with my wife and kids even though I consciously try to avoid it. There's probably another dozen or so other interactions with that special interest that I could mention from yesterday. 


The special interest is so all-consuming that I consciously have to work hard to not drive others insane with it.  

Restricted communications abilities

As a general rule, people with autism actually want to communicate with others but simply can't. They give off a strange "vibe" at functions which often makes others avoid them. They're too direct, too honest and too nervous. People with autism often avoid eye contact because it's actually "painful" and they have to concentrate so hard on what people are saying in order to stay in a conversation that they miss all the non-verbal cues. They miss tone, jokes, gestures and facial expressions and they quickly become tired from the exertions of "peopleing".

People with autism will often avoid conversations or gatherings but not because they don't want to be there. They avoid them because they know that it will only end in tears. No matter what they do, many types of social gatherings are simply too much for them. 


People who say that we're all a little autistic when referring to social communication usually mean that they have difficulties fitting into groups but more often, they're saying that they simply don't want to be around other people. This is quite a different thing altogether. 

Echolia

A person with Echolia will find themselves stimming with noise. This could be a humming sound, it could be repeated movie or TV quotes or it could be animal noises, whistling or chanting. Echolia in autism is not simply the repetition of noise, it's the use of that motion to provide a calming influence over oneself. 

Movie and TV buffs will often repeat lines from films during conversations. People often hum or whistle while they work. These are forms of echolia but they're not quite the same as echolia in autism. They're not done so much out of the need to calm oneself but out of choice. 

Resistance to Change

Just about everyone has difficulty letting go of some things, whether it's moving office or dealing with a software upgrade where all of the menu items have changed. These are normal issues. 

Resistance to change in autism isn't about these simple problems though they can certainly contribute to the issues faced. Resistance to change in the "autism sense of the word" is about when changes that would simply annoy most people cause overwhelming waves of anger or depression which can trigger suicidal thoughts or meltdowns. 


An autistic person who experiences resistance to change may find themselves in a meltdown situation simply because their schedule has changed. This isn't a "tantrum", it's simply an uncontrolled change in their circumstances.

Sensory issues 

Everyone experiences sensory issues at one point or another. People who aren't on the autism spectrum can have sensory experiences with the strongest of inputs such as very pungent odours or a loud noise. 

Sensory issues, such as a fart in an elevator or construction noises while you're trying to sleep can be difficult to bear but they're significantly different from the full range of sensory issues experienced by a person with autism. 

Sensory issues on the autism spectrum can be strong enough to trigger a fight or flight reaction, which essentially translates to either a meltdown or a shutdown. Sometimes the "flight reaction" can cause a young child on the spectrum to flee the scene and rush headlong into danger, for example a line of traffic. 

When my eldest was about five, he was still having serious sensory issues with fans of all kinds. It was extremely dangerous to take him into a public rest room as they often had hand driers and no amount of warning could prevent others from using them. If someone turned a hand drier on in the room, he would immediately flee the scene, sometimes getting lost, sometimes running headfirst into walls or tapware. 

Neurotypical (normal) people experience sensory issues as "uncomfortable" but for a person on the spectrum, those sensory issues can very dangerous - even life threatening.

Why it can be Offensive

Personally, I rarely take offence to anyone saying the wrong things about autism. I see these moments as opportunities to educate the wider public and help my peers on the spectrum. There are exceptions of course, vaccination people and curebies being good examples.  Others however will find the phrase "we're all a little bit autistic" to be very offensive.

So, why is this offensive? 

Well as you can see, the traits that neurotypical (normal) people generally associate in themselves as being similar to those of autistic people really aren't all that similar at all.

It's akin to sitting on your leg for a while until it goes numb, then trying to stand on it, failing and saying to a person in a wheelchair, "we're all a bit disabled really". 

Yeah. Put like that it is a bit offensive. 


Sunday, April 7, 2019

Asperger's and Bullying - Running Away isn't the Answer


Like many bloggers I have a stash of topics that I keep for later because they're too raw, too "popular" or too difficult to think about at the time. I often look back at these to see if they gel with my experiences of the week. In this case, I looked back over an article about the bullying and savage attack of a boy with Asperger's Syndrome in Melbourne, Australia.

This struck a chord with me because this week, I responded to a post from a mother who was talking about moving to a different city because her son was being bullied. 

I've talked about bullying quite a bit on this blog before but this time I want to talk about why running from the problem is counter-productive and go over some options for dealing with bullies in their own environment.

Why Running is Futile

Short term running is fine. If your life actually is in danger, or if you're about to be physically assaulted, then by all means, run away from that current situation.

The best places to run to are crowded places with plenty of responsible adults around. Never run and hide in an isolated place.

While running away from an immediate problem is generally an appropriate reaction (unless you're running towards other dangers), it's never a good long term fix.

Metaphoric "running away" is worse. Changing schools or states does little to help the victims of bullying and does nothing to address the problems. 

Bullying is Everywhere

Unfortunately despite all the best intentions in our society, bullying is a pervasive, insidious activity that is present nearly everywhere. No amount of running will ever put enough space between you and the nearest bully.

Bullying occurs in schools, scout halls, sporting fields, places of worship, workplaces and even family gatherings. You'll always be faced with bullies and it's important to know how to recognise and protect yourself from them.

Running from one bullying situation to another is not going to teach you anything. 


Bullying is Targeted

Bullies don't attack everyone. They may start out with some generalised bullying but what they're really looking for are potential targets. Once you become a bullies "target" they'll focus all of their attention on you.

The easiest way to become a target is simply to be "different", particularly if you're "visually different". You might have different racial characteristics or a visible disability. You might have clothing or behaviour that is required by your religion or you may have gender or sexual differences that come out your behaviour or clothing.

People often say to the parents of kids with autism; "but your son/daughter doesn't look autistic". It's actually a bit of a sore point with people on the spectrum because we don't "look" any different from everybody.

To be fair however, when it comes to kids on the autism spectrum, the visible differences are usually quite obvious in clothing and behaviour. These differences can include;

  • Clothing supporting the special interests but which is out of step with the rest of the class (for example older kids wearing Spongebob T-Shirts). 
  • Frequent "Nerdish" or "Fanboy" behaviour, for example; doing "Yoda" voices in senior years.
  • Sensory issues with texture, foods, noises, smells, lights 
  • Misinterpretations of social cues which are "amusing" to other students.
  • A "nerdish" level of knowledge on a subject such as comic books.
  • Socially awkward behaviour around others and an inability to "fit in" to the normal groups. 
  • Meltdowns or Shutdowns, "Rage Fits" etc. in front of the class
Bullies always work with targets. If you're on the autism spectrum; no matter where you go or what you do, the differences in your behaviour will alert bullies to your potential as a target. Running is simply not the answer. 



Options for the Prevention of Bullying

There's a lot of discussion on bullying out there in the social world and it seems that everyone has an opinion or a childhood story. Many of these revolve around violent solutions, such as learning karate or attacking the bully in some way. 

Violent options might have worked in the past but they won't work in today's world. At best, you'll land yourself in disciplinary or legal trouble and at worst, you could suffer injuries or get yourself incarcerated. You'll have to try other methods.

Talk to People in Authority

Usually the first thing that you should do is go talk to someone in authority. The exceptions to this rule are;

  • When the person in authority has a strong relationship to the bully
  • When your position is unsafe (for example, if your workplace is more likely to support the bully)

If either of these things are the case, then you can continue to fight but you need to realise that you have an unreasonably high chance of losing. In these situations, bureaucracy almost always wins out unless you have a strong group of supporters who can verify your experience.

If you can't find a strong group of supporters you my be better off cutting your losses and leaving because it means that you're really not in a safe environment. 

If you do speak with someone in authority, remember that you have a lot of control over the situation.  If you're not ready for a confrontation, you can ask that they do not confront the bully but instead;

  • be more vigilant when you're required to interact with the bully.
  • provide you with alternative interactions (ie: group work with different people).
  • provide you with a safe space to retreat to if you feel threatened.
Don't be afraid to tell people exactly what you need from them. 


One of the most important things is to get bullying documented early because one of the main parts of the bullying definition is that the activity has to be sustained and repeated.  

It will also help if you start keeping a diary of the dates, times and locations of behaviours that are affecting you -- but do not show the diary to the bully, don't mention the diary to them and don't make notes in the diary in front of them. 

If you find yourself getting on well with the person in authority, you might want to take them on as your bullying counsellor. Ask them for help and advice in resolving the situation. 


Join or Form an Anti-Bullying Group

If you don't feel that your support person is providing adequate support, the alternatives are to either escalate the problem to someone who can or join a group of people in a similar situation.

Forming or joining a group is usually the easiest option.

Pay special attention to the behaviour of your bully(s). In order to form a group, you need to find others who are being bullied, ideally by the same bully but not necessarily. Make friends with these people but don't talk about bullying to start with. Find as many people in a similar situation to you as  possible -- even if they're in different year groups. Try to spend lunch times with them.

When bullies turn up, be sure to support each other. If the bullies manage to catch any of you by yourselves, you need to report it as a group.

Once the bullies realise that they're dealing with a group instead of an individual, you'll find that their attacks drop off and they'll look for smaller, easier targets. 

Escalate Problems to the Community

The autism community is a loyal one and we take bullying very seriously. If you're being bullied and you're unable to find a workable solution, then check online. Look for autism communities in your area who will lend support.

Older members will often happily act as mentors and will guide you through traumatic events.

Younger members can provide "real-life" friendship and support.  You probably won't find anyone to actually "fight off" the bullies but you will find people who are willing to intervene on your behalf, people who can advise you on what to do and qualified people who, if necessary will talk to those in authority. 


The best places to start looking for help are autism groups on Facebook and forums such as WrongPlanet.net.  Make sure that you join private or hidden groups rather than public ones as you need to know that your posts are not being shared on your home page.

Links to my other posts on bullying;

I hope this post has helped you to get a perspective on why running away isn't the answer and has provided you with some viable options.  Here are some of my other posts on bullying; 

Monday, April 1, 2019

Pressuring people with Autism outside their Comfort Space can lead to Issues

A few months ago, my youngest (15) went on a school camp. There was an incident at the camp which occurred because of his differences. It wasn't handled very well and it spiralled out of control. We finally got a resolution this week and I feel that now is the time to look at the bigger picture and talk about how things could have been handled better. 

I would expect this post to be useful for all teachers who have kids on the spectrum in their classes, camp "controllers" and parents in general. 


What Happened

As a boy with autism, my son is always nervous about trying new things. New places and disruptions to his normal routine, such as camps can really mess with his head. He works hard to push himself to try things, even if he's a little afraid of them.

This particular camp had a high ropes experience and he was quite nervous about it but once he saw the ropes he decided that he would be able to do it. He did very well on the course until he reached a part where the course changed from rope walking to a flying fox. At that point, he decided that he couldn't do it and asked to come down.

The camp employee told him that he was not permitted to come down and when this was not accepted he was threatened. The camp employee said "If I have to come up there, I'm going to push you off".  My son began screaming for the teachers who were nearby but they paid him no attention.

The camp employee climbed a nearby ladder to the point where my son was and started trying to drag him off the pole to which he clung. Another boy was instructed to assist by prising his fingers off. Fortunately my son is quite strong and he managed to hang on but he was still reduced to tears in front of his peers.

Eventually the camp instructor gave up and went to get the backpack of tools he needed to get my son off the ropes and all was resolved. Later in the camp, the other boy who was asked to help came up to my son and apologised. 


After the Incident

We knew there had been an issue because my son sent a message to his brother via social media. The camp finished the next morning but we were never informed by the school. My son was quite agitated throughout the weekend after he came home and was reluctant to go back to school on the Monday.

My wife and I went to see the principal on the Monday. We learned that the incident hadn't been reported and the principal promised that there would be an investigation and that the teachers concerned would apologise to my son for having ignored his cries for help.

After almost three months we received a letter that simply told us that, "The investigation has concluded." There was no apology. My wife made a call to the "Manager of Child Protection" but was told that no more information was forthcoming.



We followed this up with a strongly worded letter and finally, our son received an apology. He could at last put it behind him and move on. 

Take Aways

There's a few things I wanted to discuss about this incident;
  • People will change their Minds
  • Duty of Care
  • Reporting is Important
  • Apologies are meaningful

People will change their Minds

Everyone is entitled to change their mind when doing something uncomfortable or unknown. This is especially true for people on the autism spectrum as the unknown can trigger phobias or strong feelings without warning.

In this particular case, the issue was that the agreed upon activity morphed into something less comfortable. It's entirely possible that with careful coaxing and some accommodations, such as a rope to slow the descent of the flying fox, my son may have attempted the final stage of the activity.


If that doesn't work, there needs to be a way out. Trapping a fearful individual in an activity is dangerous for the individual and for people around them. This is the same reason that rides at the funfair stop the minute that someone raises an objection. 

Duty of Care

All individuals who are looking after adults and children accept a "duty of care" for their charges in their areas of expertise. In the case of the camp instructors, that duty of care includes safety on their activities, hence they need to be on hand for things such as harnessing.

In the case of teachers, they have a duty of care to look after the physical and emotional well being of the children on their camp. If a child is showing signs of distress, the signals for which include fear, shouting and screaming, then it is their duty to intervene.

When parents sign forms for camps and excursions, they're signing the "duty of care" over to the "known" individuals on the forms. These could be teachers, scout leaders or friends. You can't expect a camp worker to be skilled in handling a child with "differences" but you can expect teachers to know your child well and to have a least a smattering of special needs care experience.


It's rare that parents engage directly in a care-contract with the camp instructors. It's nearly always with a person who is already well known to your child. 

Reporting is Important

When an incident occurs with a child on the autism spectrum, the repercussions can continue for a long time. Sometimes they develop into full-fledged phobias which result in a child who refuses to attend a camp again, doesn't want to go to school or refuses to participate in any similar activities, for example swimming or activities involving heights. 

It's critical that when an incident occurs, a report is written and parents and school officials are informed immediately. Phobias can become much stronger if they're not addressed early on as children on the spectrum obsess over the problem and replay incidents over and over in their minds. 

In our case, there was a loss of trust in the teachers responsible and there was humiliation because the our son had broken down in front of his peers. 

Sometimes there are no outward signs that these issues exist and the child may simply present as a little more angry, weepy or withdrawn. We were lucky that my other son knew that something had happened and we could dig carefully for the truth of the matter. 

Apologies are Meaningful

Our son attends a Catholic school. There are a few reasons for this but one of them is that we hope that he will learn some of the good "Christian" behaviours.  In particular, I'm talking about the acknowledgement of failures and the seeking of forgiveness.

Unfortunately, too many people and institutions these days are hamstrung by legal red-tape to practice what they preach.  The legal system tells us to "never admit to anything" even if you know that you're in the wrong.

I find this idea very offensive. 


People with Asperger's can most certainly tell lies but they don't generally feel comfortable doing it -- and they usually don't lie very well. Covering up your misdeeds is lying and it's deeply offensive to a person on the spectrum. It can lead to a complete loss of trust.

It's much better to simply acknowledge that you've made a mistake, attempt to correct it as best that you can and promise to try not to repeat the mistake in future.

Acknowledging your own failings doesn't make you a weaker person. It makes you a stronger one.


Concluding

I think we all feel better now that this particular incident is resolved. My letter asked the school to acknowledge that the inaction of the teachers was wrong and to get them to apologise to my son.

Thanks to my wife's careful forethought, my son had been instructed to accept any apologies with grace and to allow everything to calm down. This meant that when his teachers apologised to him, he didn't respond with some kind of "slap in the face comment" but accepted with grace and humility.

It makes him a better person and it means that the teachers won't feel bad about the whole thing. If anything, it's built a bridge and it means that they'll be there to support him in the future.



He feels satisfied that he has been understood and that the pattern is unlikely to repeat with other students. He is also able to accept that his breakdown in front of his peers was due to pressure that shouldn't have been placed upon his shoulders.

Receiving an apology has enabled him to move on.