Monday, June 11, 2018

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. 

Sunday, May 20, 2018

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. 

Sunday, May 13, 2018

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. 

Wednesday, April 25, 2018

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. 

Tuesday, April 3, 2018

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.  
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.

Tuesday, March 20, 2018

Dealing with Food Wrapper Mess kids on the Autism Spectrum

You've been hounding your kid for a week to clean up his room and you finally go in because you need to pick up his washing or he'll have nothing to wear to school next week.

You're shocked to find a little pile of candy wrappers, often crawling with ants. The carpet is a mess and the bin is only an arm's length away. 

Yes, you've got a food wrapper mess kid.


I'm not sure if this is a  Asperger’s thing or just a normal teenager thing but I suspect that the problem is a little worse with kids on the spectrum.

Junk Food is Harmful. Right?

There's no denying that junk food isn't a healthy option or that in large quantities it will create obesity issues. It's important to try to impose some limits on your children’s eating habits.

What you don't want to do is get so hung up on the idea of cutting out sugar that you drive these behaviours underground.  After all, your kids will eventually be in a position where they have their own money and the opportunity to make choices when you're not present.

You need them to be able to self-manage by themselves. Banning food simply encourages your kids to hide it.

These kids are more than just Lazy

It's certainly true that the kids of today are considerably less active than the kids in the previous generation.  It's not a sudden change, it's something that has been happening for several generations now as technology changes the way that we live.

It's easy to see that laziness as the reason that kids won't pick up after themselves but it doesn't really explain why there are piles of trash so close to rubbish bins.

I think that a lot of the problems are related to attention span. I don't think that the kids build these little piles of rubbish with the intention of not putting it in the bin (except where they toss it under or behind furniture).

Most of the time, I think that the rubbish is stored neatly with the intention to bin it when they get up but then the activities of the present take over.

For example, they might be watching a movie, playing a video game, reading a book, listening to music or engaged in some other activity, when they're called down to dinner, off to school or into bed.

In the ensuing pandemonium, their little piles of rubbish are forgotten. I think this is more common with kids on the Spectrum simply because they're more focused and harder to interrupt.

What you can do about it?

For the most part, you're most likely already doing all the right things;

Don’t ban foods outright. Allow your kids to taste them but try to encourage them to make good choices.

Allow a bit of Junk (within reason)

Don't stress out too much about junk foods.  Kids have very fast metabolisms and while they're still growing, the food will get burned off quickly. Occasional junk foods are important too as they can reinforce much needed celebrations or become great rewards for effort.


Kids usually put on a little weight before a growth spurt but if you're really worried, talk to a doctor.  For the most part you've got until they're about 18 before they need to seriously start watching their weight so unless your child is showing signs of struggling or your physician considers it an issue, the occasional binge is okay.

Fill kids up with Good food and Water

Make sure that your kids have regular meals (or mealtimes). With older kids, it's okay to have “choose your own adventure dinners" once or twice per week. In fact, this teaches them to cook (or at least defrost) and it gives you clear insights into their favourite foods.

When you do cook, make it clear that you expect them to eat it all. Obviously exercise sensible portion control and don’t force them to eat more than they should. Make sure that your kids are drinking plenty of water too. 

The aim here is to ensure that they don't “fill up on sweets" before dinner and that they don't have a much of an appetite after dinner.

Responsible Kids are Tidier Kids

Make your kids responsible for their own messes. Don't clean up their little piles of rubbish. Tell them to do it -- and watch them do it. Make something that they like, such as dessert, computer time or just free-time dependant on completion of the task.

Get into the habit of including the messes in your routines. For example, instead of saying “Come down and have your dinner” try to say “put your mess in the bin and then come down for dinner”. With a bit of luck you get them to start cleaning up automatically.

Sunday, February 18, 2018

Getting Speech Flowing in Non-Verbal Children

One of the many interesting things about people on the autism spectrum is that the abilities of most people seem to be wildly underestimated. It’s hard to come up with a simple reason why this is the case but the results can have catastrophic effects on their lives and families.

One of the most problematic areas of autism is communication. It’s often assumed that kids who don’t reach their speech milestones by ages 4-5 will never communicate; or at the very least that they will never speak.

This is not necessarily the case and as circumstances change, new technologies develop and your children get a better “handle” on their differences, speech can become a very real possibility. 

Ending the Milestones

Unfortunately, some parents have already given up by the time their children are ready to develop language and they never have a chance to reach their potential. This is understandable as parents can only continue with normal milestones for a limited time before they need start on an alternative track in order to provide the best care for their children.

It's not always obvious that the old milestones need to be revisited in the future.

One of the most important things to remember as an autism parent is that you're no longer following the standard milestones. Stop competing with the other parents and accept that you're proceeding at a different pace ... and potentially, in a different order. Speech may not necessarily come first.


Communication is Key

Imagine what it would be like if you were trying to work in an office where nobody else could understand your speech, writing or gestures. Now imagine that one of your colleagues liked to play loud music, another liked to bump the desk and yet another kept playing with the lights turning them on and off constantly. For good measure, assume that one of your colleagues keeps overdoing her perfume and that another simply can't keep their hands off the things on your desk.

It's important to remember that your child on the spectrum isn't just struggling with the difficulty of learning to communicate. They're struggling with their own sensitivities which are usually more easily overwhelmed than their peers. 

In the office scenario I described earlier, many people would eventually use some form of physical contact to communicate with their colleagues. Holding the shaking hand or bobbing knee or their table-bumping worker, covering the light switch or pulling the plug on the loud music.

Your child isn't going to be quite that sophisticated and their reaction to being overwhelmed is more likely to be simply covering their eyes and ears, rocking, crying, snatching items back and hitting or biting other children.

While there are many reasons for this kind of behaviour in kids, many of them are related to the inability to communicate. 


Alternative Communication

Regardless of what you do, your child is eventually going to learn alternative methods of communication. Whether those methods are positive or negative are up to you.

For example, if you take a child to someone's house and there's nothing for them to play with, they'll eventually do some form of damage. It could be spilling a drink, knocking over an ornament or annoying a pet. Whatever happens is less important than how you react. Many parents react to these incidents by making a hasty exit.

Next time, you may be shopping and your child may knock something over or pull some clothes off the racks ... and again you make a hasty exit.

In no time at all, you find yourself with a walking disaster area. You can't stay anywhere for long because your child will always "trash the place". Others around you will see this as extremely naughty behaviour but it's hard to understand because your child is normally so good at home.

What's really happening is that your child has learned to communicate with you. Trashing the place means - "I'm ready to go home now". 

If you have non-verbal children, have a think about how they react in certain circumstances. Do they follow patterns? Are there certain behaviours that occur around mealtimes? Do they act differently when you pass a sweet shop? Are there unspoken rules in their behaviour, such as; needing to get a new toy whenever you're out shopping in order to avoid a tantrum?

If so, that's communication. It might be negative communication but it's still something that you can build upon. 


Improving Communication

Once it's obvious that your child is communicating with you, it's time to start changing the nature of that communication and moving it to less destructive methods. Some children respond well to signing, while other respond better to pointing at charts. Surprisingly, some children are able to communicate through writing or typing or via technology such as phones and tablets even though they have no speech.

You'll need to try a lot of options and a lot of repetition in order to see what works best for your child. 

The most important thing to remember is that your child's early communication attempts will centre around their "wants".  Things that they either want or don't want and your most successful communication will result in immediate rewards.

"Gaming" your way to Communication

The best ways to get your children to communicate is to engage them one-on-one in things that they enjoy, for example games. Since this is about communicating "wants" rather than "don't wants", the communication should be fairly positive and fun.

Suppose that you limit your child to three major toys for a particular series of games that you play together regularly; In this example, Truck, Bear and Ball.  These three have quite different names so it's going to be fairly easy to distinguish between them. You should spend time playing with ONE of these and be sure to repeat the name over and over. 

"Today we will play with the TRUCK".  Spend time playing with the truck, perhaps pushing it back and forward towards each other. As you push it, say things like "I will push the TRUCK to you" or "are you ready for me to push the TRUCK" and "can I have the TRUCK now" or "could you push the TRUCK towards me". 

It's not necessary for you to use simple language like "PUSH TRUCK" and in fact, using baby-talk will make it harder for your child to distinguish the nouns. You want him to understand that the object is called a TRUCK not a PUSH TRUCK.

If you mention the truck frequently when you push it towards your child (not necessarily every time), you'll establish an understanding. Make sure that the game is fun too and if you child tires of it, stop playing.

After a while, say twenty turns or more, introduce some delays, perhaps looking around without actually introducing anything new, distracting or more interesting to your child. Perhaps pretending not to notice that the truck has returned to you.

See if your child tries to communicate. They'll most likely gesture but see if you can hold out for some noise. Eventually you should start to hear a word that sounds like Truck though you probably shouldn't expect it in first few sessions of play. You may have to do this a few times, with longer delays on your part in order to spark the language.

Avoid Distractions

When you play with your child like this, you'll need to avoid distractions. I'm not just talking about Telephones and Televisions, though these must remain OFF and preferably in another room entirely. You also need to concentrate on the task at hand, which is getting your child to communicate what they want.

You want the word TRUCK and ideally, you want the words PUSH and TRUCK. As things progress, you'll need to confuse matters, for example "Who should push the truck" or "Where should I push the truck to".  The eventual aim being to get your child to not only say the words but to actually understand what they're saying. For this reason, you need to be careful not to put words into your child's mouth.

It's going to be a great moment when you finally hear the words but don't get carried away and celebrate. Simply accept that the words have been spoken and push the truck speedily towards your child. 

You've no doubt heard that children love to receive praise as a reward but in this case, the child isn't seeking a reward. They're seeking a way to use language to get something done in the real world. If you want to encourage the use of more language, then you need to show them that it's very effective.

Expanding Nouns

Don't be tempted to keep playing with just the truck for weeks. Switch between other toys but keep your special three reserved for your special parent/child playtime sessions. If you let your child have those toys at other times, they'll lose their special appeal.

Eventually, after having played with all the toys from one "session" to another -- particularly if you've gotten a word or two out of your child, you'll want to introduce the concept of a choice. "What should we play with this time?"

You might have to offer choices for the first few times but the aim is to get the child to use their own words rather than parroting you. 

If you let your child simply point to the toy, they'll see no need to use their words. You need to ensure that words are far more effective than pointing.

Going out into the Real World

The more your child finds words to be more effective than actions, the more they'll use them. You'll have to watch your reactions to their non-verbal activities and make sure that you don't become predictable. In other words, their non-verbal "wants" and "don't wants" need to be met with a degree of "misunderstanding" so that their words will seem more powerful.

If your child starts saying BYE and waving to their grandmother, rather than knocking over an object, you need to see this as a step in a positive direction and react accordingly where possible.

Eventually you'll need to teach them that other people have wants and needs too but that's a whole different ball game. 



Note: Some of the ideas in this post were inspired by Robert J. Bernstein's book "Uniquely Normal" which I reviewed recently.