Tuesday, May 10, 2016

Dealing with Sensitivities and Triggers when the Whole Family has Autism Spectrum Disorders

These days, Autism Spectrum Disorders aren't uncommon.  In fact, it’s pretty clear that there's a strong genetic link. 

People with ASDs Collect Together 

If you have autism in one form or another (or if you have a sibling on the autism spectrum), there's a better than average chance that you will have at least one child on the spectrum.

It's not vaccines, it's not head trauma or defective parenting. It's genetics, pure and simple. The apple really doesn't fall too far from the tree.

What's less well documented is that people with autism seem to prefer the company of others on the spectrum. In fact, it seems that we have an arguably better sense for detecting individuals like ourselves in social situations than regular people.

The odds of a person on the autism spectrum partnering with another person on the autism spectrum seem to be higher than most.

The upshot of this is that there are many families out there which contain more than one person on the autism spectrum. In fact, I'd go so far as to suggest that it's more common to have more than it is to have just the one.

Navigating Triggers and Sensitivities 

One of the toughest parts of being a parent in a family with a single individual on the spectrum is “navigating the maze of triggers and sensitivities”.

Triggering 

Many people with autism walk around on the verge of a meltdown (an explosive state) or on the verge of a shut-down (an implosive state).

All it takes is a “trigger”, to set them off. The triggers are generally undocumented and are quite often unknown - even to the people who have autism. They aren't big (or even bad) things. Nearly anything can be a trigger depending upon the life-experience of the person.

As a parent, one of the most important tasks in your life is to identify these triggers and find ways to avoid them.  If you're an adult with autism, then it's also your mission in life to identify your personal triggers and sensitivities.

This is easier said than done because triggers often run deeper than you'd expect.

For example, a child may have a meltdown when asked to clean their room - and you might start to identify the trigger as a “room-cleaning” issue - when the real issue is more to do with how (or when) you asked the child to clean their room.

In fact, ask as child, even a non-spectrum child, to do anything while they're engaged in playing a video game and you're sure to get a negative response.

The only way around this is to keep trying to identify triggers and to look for patterns.

Sensitivities 

Triggers are frequently “the final straw” in a long list of sensitivity tripping events.

The same triggers may (or may not) cause a meltdown depending upon how many sensitivities have already been tripped.

For example, if your child has had a good night's  sleep, a trigger like spilling milk in the morning might not have the same impact as the same event after a long and difficult day at school.

As such, it helps if you can also identify your child's particular sensitivities and try to avoid, or at least reduce them.

This isn't too hard for most sensitivities, such as cooking ingredients, itchy clothing, specific smells and the sudden re-scheduling of events but sometimes the sensitivities are centred around (or tripped by) other individuals - particularly family members.

Dealing with Family 

As I mentioned earlier, it's becoming increasingly common to find families where more than one individual has an ASD.

One of the big problems with this is that quite often, the things that calm one member of the family trigger other members. For example; verbal stimming (where an individual makes a constant noise mainly because it feels good).

In short bursts, verbal stimming is tolerable but over longer periods it becomes a major issue.

Like any family issue though, this needs to be solved via compromise. 

If possible, alternative forms of stimming should be suggested but of course, not everyone can change their stims. Sometimes the change has to come from elsewhere (noise blocking headphones,spending time in open spaces or perhaps covering up the noise with a louder one).

Family Meltdowns

The worst problems occur when the meltdown activities of one family member triggers a meltdown in others.

If you don't catch a meltdown before it starts, you generally can't stop it and just have to see it through to the end. If reactive meltdowns are common in your household then you need to work out a good “meltdown procedure”.

All people who feel a meltdown state coming on need somewhere to retreat to (somewhere they can be alone). Different individuals need different places because the last thing you should do with an individual in an uncontrollable state is to put them with someone else in a similar state.

The process for dealing with meltdowns  for multiple individuals becomes the same as the process for dealing with single individuals once they're isolated. 

Thursday, April 21, 2016

Book Review: The Special Needs SCHOOL Survival Guide: Handbook for Autism, Sensory Processing Disorder, ADHD, Learning Disabilities & More! By Cara Koscinski MOT OTR/L (The Pocket)

The Special Needs SCHOOL Survival Guide looks like a thin book but it has one of the highest “fact per page” scores of any of these types of books. It's really packed with information. It’s not the kind of book you can simply read cover-to-cover. Instead, you’ll find yourself wanting to stop every few minutes to note an activity that you might want to try or a web site you might want to visit. 

The book focusses on the resolution of school problems for kids with many different kinds of special needs. There's some information for parents, particularly in the early sections but the bulk of the book seems to be aimed at teachers and school occupational therapists.

The first chapters deal with the Individualized Education Plan (IEP) and the 504 plan. The book covers what they are, how they differ, how they work and what parents and teachers can expect to get out of them.

From there the book dives into occupational therapy in school in detail, In particular, it covers exercises which can help specific areas of academic and social learning and provides many links to diverse and relevant information sources on the Internet.

Early chapters cover many different aspects of handwriting including pre-handwriting preparation, letter reversal, pencil grip and techniques for dealing with left handers. There's also a good chapter on fine motor coordination.

Each chapter contains loads of tips and therapies, most of which don't require any significant resources. There are also plenty of “out of the pocket activities” (tips).  Nearly every chapter ends with a long list of relevant URLs for further reading.

The author, Cara Koscinski, has a children on the autism spectrum as well as OT qualifications - and it shows in her writing. She writes both as a parent and a teacher. She discusses her personal experiences with other OT’s and highlights the problems and benefits associated with various therapies. She makes some very interesting personal observations, particularly relating to “letting your child spin”.

This is a great book for teachers and OTs and it's ideally suited to people who encounter lots of children with various differences every day. It has lots of good information on identifying specific conditions including co-morbids and there are entire chapters dealing with some of the major differences. In particular, the chapters Autism and Sensory Processing Disorder (SPD) and ADHD are particularly good. They contain some very good insight (particularly from the point of view of the child).

The Special Needs SCHOOL Survival Guide: Handbook for Autism, Sensory Processing Disorder, ADHD, Learning Disabilities & More! By Cara Koscinski MOT OTR/L (The Pocket) is published by Future Horizons and is available in paperback from Future Horizons, or in paperback or Kindle format from Amazon.

Cara Koscinski writes for the Pocket Occupational Therapist at http://www.pocketot.com/ it’s a great site with lots of good information and freebies.  Well worth a visit.

Honesty Clause: I was provided with a copy of this book free of charge for review purposes. 



Thursday, April 14, 2016

Autism, Asperger’s and Surviving in the Workplace

For many people with autism, getting a job is a pretty difficult prospect in itself but once they have one, the difficulties shift towards keeping the job.

Keeping a job when you are on the autism spectrum seems to be a matter of maintaining the delicate balance between being largely invisible and not being too quiet.

Hiding in Plain Sight 

For many people, the word “autism” conjures up bad images. At one end of the spectrum, people assume that they are hiring a person who will need babysitting rather than someone who will perform their allotted tasks independently. At the other end of the spectrum, people think of the high school shootings or computer hackers and sense danger in employees on the spectrum. 

Of course, we've just had “autism acceptance month”, so everyone is fine with it all now right? Wrong. What people say and what they do are very separate things. If it was that easy to conquer fear and discrimination, there would be no reason to discuss racial issues any more.

We can control, to some extent, what people say and do but we don't have any power over their thoughts - or the things that they say and do in secrecy.

For the time being, until you are an accepted and valued person on your own merits at your workplace, it's best not to disclose that you have autism - unless of course your traits are significant enough that most people will notice them without you having pointed them out.

It's not legal to get rid of employees simply because you discover that they have a medical condition but that won't stop a determined employer from finding or arranging another excuse.

Hostile Workplace Environments

When you start a new job, you generally start at the bottom of the corporate ladder doing the most menial jobs. This is true whether you're a school leaver or a university graduate.

Everybody has to start somewhere and unfortunately, the lower positions can be fairly competitive in terms of promotion prospects. They're also positions which are filled by less educated people or by other school leavers who are just getting their first taste of freedom and don't know how to behave in the workplace.

Consequently there is a lot of teasing, jostling and bullying happening in the lower levels of every workplace.

Bullying in the Workplace 

Different Jobs come with different levels of professionalism. For example, you have to expect that a job at a fast food outlet won't command the same professionalism from fellow employees as an office or bank job.

Your fellow workers at fast food outlets tend to be young and inexperienced. They're less likely to be understanding of people with differences - and of course due to the noisy, smelly and greasy environment, fast food outlets are more likely to trip autistic sensitivities than most jobs.

That's not to say that there's no bullying in office environments. Sometimes office bullies are worse because office bullying tends to be done by adults with a long history of manipulating people to achieve their intentions. Office environments in particular tend to attract sociopathic workers.

Hardening Yourself 

In the school yard, you can report bullies to the teachers and occasionally things don't go worse for you.

In the workplace, despite all of the laws and social commentary that says otherwise, it's almost impossible to report a bully and survive, particularly if you're a junior.

The answer is to harden yourself against the bullying and attempt to shine through. Note that hardening yourself means to refuse to allow the bullying to affect you, rather than to attempt to fight back. If you fight back in the workplace, you may spur the bully into further acts and if you come off as aggressive, you will be caught by management.

Harden yourself by trying to think positive. In particular, don't take all corrections as criticisms. Some people sound nasty in your own head when you read their emails - or even when you listened to them but they don't always mean to be that way. Some people simply have angry sounding voices or "angry-looking" faces.

You have to be mindful that much of what you get out of communication depends on what you bring to the conversation. 

Of course there are other people DO mean to be that way but there's not a lot you can do about them.

One of the best things to do is to try to only provide positive reactions. Remember, if you “lose it in a job”, you generally lose the job. Be nice and "presume" no matter how wrongly, that people mean the best. It will help you be happier and for the most part it will make people at work happier to interact
with you.

Being pleasant to work with will attract other pleasant colleagues and positive mentors. Eventually, these people will make it hard for workplace bullies to ruin your day. 

Find Happiness

You can't undervalue happiness. If you're sad or depressed at work, it will be noticed and your colleagues and supervisors will assume that you don't want to work there and get rid of you.

It sucks but it's true. No matter how much pain suffering and trauma you have in your life, the workplace is generally unforgiving. Your issues will be tolerated for a short period of time, depending upon your popularity, how long you have worked there and how valuable your contribution towards the workplace is.

You're not irreplaceable however and that means that you need to give the impression that you're happy -- even when you're not.

Practice fake smiling, avoiding overly emotional discussions and keeping "bounce" in your voice. 

You're going out into the world of “plastic people”. Sadly, this means that you have to appear to be a bit “plastic” like them in order to survive.

Monday, March 21, 2016

Do People with Asperger's Syndrome have Difficulty telling Left from Right?

Ever since I was a little kid, I have had problems distinguishing left from right. I always assumed that it was “just me” but recently I've found that a lot of people with Asperger’s have the same problem.  

It might be an Asperger’s thing. It might be an “everyone” thing … or it might be a “nerd thing”. Who knows?

All I know is that although I never actually get my left and right mixed up these days,  if someone asks me to raise my left hand,  there's a noticeable delay between the instruction and my compliance. In fact,  I usually have to mimic writing  (I'm left handed), in order to identify the correct hand.

It's been that way for as long as I can remember.

Growing Up

As a child, I was always the first one to get out in games like “Simon says” but I had always thought that it was something to do with being deaf.  Even when I could hear the teachers perfectly well I still had to look at the other students before I could make a move - and even then,  I'd often copy it wrong.

This was a problem that pretty much disappeared as I reached adulthood and I naturally presumed that I had conquered it. After all, as I said earlier,  I don't get the directions wrong.. just slower and once you’re in real life situations rather than games, reaction times for left and right are less critical.

The problem did crop up a few times during my stint as a cub scout leader but again I put it down to poor hearing and the idea that I'm simply not very good at certain types of games. In any case, as the leader, I wasn't involved in actually “playing” the games very often.

What changed my mind on the whole thing was joining a Karate group and also doing some classes at the gym.

Karate

At karate, I can usually hear the sensei when he barks out orders but when they involve left and right, I still have to look at the others when they move in order to get my reaction time up. 

What is interesting though is that I have no problems with the Kata (memorised sequences of moves) because they’re always the same moves. My problems occur when sensei is taking us through stretching exercises and he says stretch your right arm.  Usually it’s not a problem but sometimes he switches the order that he does things, right first, and then left. When he does that he always catches me out. Usually nobody else, just me.

The other interesting thing about Karate is that I've found that the only way I can mimic new moves as the sensei teaches us is to turn my body to face the same direction as his (while he is demonstrating) and then match my arms and legs with his. I can't look at him and easily reverse the movements and I can't do it all in one go.  I have to do each part of the procedure individually - I can’t look once and automatically decide that he has both his right arm and right leg out. It’s a painstaking process that I never see the other karate people doing.

The Gym

The gym class made everything much clearer. I mean it’s obvious that being a newbie at a high intensity class means that you’re going to be slower than everyone around you. It also means that you’re going to put the wrong leg out occasionally… more than occasionally.

In my case, I found that I couldn't match my movements to anyone. By the time I’d identified which leg they put out and put mine out, they had the other leg out. After a while, I started trying to identify the arm or leg that wasn't moving and trying to put that out instead. It worked a little better.

Of course, as things warmed up, I found that I couldn't match the speed of the class but mostly that I couldn't think about my arms and my legs at the same time. When I think about it, I suspect that it was evidence of issues in my vestibular system.  Not so much balance as spatial orientation.

A Test

Since I have two kids with Asperger’s syndrome (and they’re very different), I basically have my own “home laboratory” for  certain kinds of social tests. I decided to run a couple of quick tests with my boys (and with my wife).


  • Throwing an object and saying “catch this with your left hand” - this places a sense of urgency on the test and prevents a delayed but correct response from upsetting the results.
  • Asking the kids to touch their right foot when they’re sitting on their feet (or sitting cross-legged).
  • Asking them to pick something up with their right hand when they were walking past it. 


What was interesting was that my youngest (12) got everything right first go, as did my wife. My eldest son (15) nearly always got things wrong.

There’s clearly something there that’s a clear difference between the two kids. It’s obviously not a core part of Asperger’s syndrome but it’s possible that it’s a co-condition.

Thursday, March 3, 2016

Book Review: Living, Loving and Laughing with Asperger's (Volume 1) by Dave Angel

Living, Loving and Laughing with Asperger's: 52 tips, stories and inspirational ideas for parents of children with Asperger's (Volume 1) by Dave Angel is a free ebook which is well worth reading.


At 134 pages, it's fairly light reading and since most articles run for 1 and a half pages, it's very easy to pick up and put down. It makes great reading while You're waiting for someone or using public transport.

The book itself is divided into three sections, the first and in my opinion, the best, section contains 26 tips from Dave. The second section contains another 19 reader-submitted tips and the last section, which is thankfully short contains 7 real life stories.

I can't say that I liked the last section which felt “braggy”, with parents and grandparents basically saying how great their kids are. As a parent of two boys who struggle both socially and academically, I don't really enjoy hearing how great other kids are. The first two sections of the book however are great - and they comprise the bulk of the book.

The book covers a whole range of topics aimed at people of various ages though particularly for parents of pre-teen children. Of course there's some good material here for parents of older children too. It covers a vast array of topics including; social skills, using lists and charts,special interests, mentors, communicating with teachers, advocacy, business, homework, sensory issues, food, meltdowns and vacations.

Dave has been writing about Asperger's since 2006 on his blog at http://parentingaspergers.com/blog and most of these tips come from his daily emails. If you've been following his site for a while, there's not a lot that's particularly new here but it is very handy to have all the tips collected in a single resource.

If you're new to Dave’s site then this is a great introduction.

Living, Loving and Laughing with Asperger's: 52 tips, stories and inspirational ideas for parents of children with Asperger's (Volume 1) by Dave Angel is available free of charge from Amazon USAmazon UK and Amazon Australia.  It's also available as a direct ePub download from Smashwords.

Wednesday, March 2, 2016

Anxiety Presents in Different Ways

Anxiety is a constant companion in our family. Both of my kids suffer badly from anxiety and it affects many aspects of their lives. As parents, we do our best to spot potential anxiety-inducing events ahead of time and either avoid them altogether or at least adjust our kids’ perceptions of those events to reduce the impact.

The anxiety that my eldest son reacts most to comes from direct environmental factors which impact his senses. For example, some sounds, sights, smells, touch, taste, texture and spacial awareness.  In particular, anything that could cause pain is a high anxiety event, even if it doesn't actually cause any pain.

As a result, many things are a nightmare, mealtimes for example, where the merest differences in texture (or sign, smell or God forbid, taste) will render even the tastiest of meals inedible.

My son loves McDonalds but is yet to eat a hamburger, he lives off chicken nuggets and fries. Similarly, when it comes to pizza, we're still trying to move past cheese pizzas to ones that actually have toppings on them. He's sixteen by the way.

Don't get me started on dentists or doctors or needles either. These are uncomfortable events for most families but in our case, you'd think we were taking him out for execution. It's only been a few years since we managed to get him to accept the barber’s clippers.

Everything we do needs to take his anxiety into account. Everything is about planning. You might think that he's being “babied” but that's not the case. 

We dig our heels in when things don't matter, for example, on the pizzas. Depending upon how far we go, one of two things happens; if we push lightly, for example, via a pepperoni pizza, he’ll simply pick the top off and discard it. If we push too hard; chicken and mushroom pizza, for example, he’ll simply refuse to eat. I can tell you from experience that nothing will make a sixteen year old eat if they don't want to.

Forcefully pushing through the anxiety is out of the question too. Don't even think about it - or if you do, ask yourself how putting a claustrophobic person in a box would help them - because it amounts to the same thing.

Having two sons of the spectrum affords me many opportunities, some of which I could do without. On the anxiety front, it affords me the privilege of seeing two entirely different types of anxiety.

My younger son, aged 13 experiences anxiety quite differently. He has more “social anxiety” and reacts poorly to groups of people and to changes of schedule.

While most other students look forward to non-academic days, such as sports carnivals, these cause him a great deal of distress. So much so that after he refused to get out of the car a few times, we decided to keep him at home for all (immediate) future events.

Obviously this kind of avoidance can’t go on forever and so, as part of his starting secondary school, he’s been told that he must go to these events - at least to socialise, even if he doesn't participate. So far, this seems to be working out well for us. 

The key of course, to dealing with anxiety is to anticipate, and in so far as is possible, to plan ahead. 

My latest post over at Special-Ism covers this topic in detail, hop over to have a read; 



Monday, February 22, 2016

Book Review: Autism and the Extended Family: A Guide for those Outside the Immediate Family who know and love Someone with Autism by Raun Melmed M.D. & Maria Wheeler M.Ed

Autism and the extended family is a book with an unusual feel to it. In fact, it's opening chapters felt so different that I was initially wondering if I would like the book. As it turns out, the language is completely appropriate and it is a good book. It's just that being as close to autism as I am, I'm not in the target audience.

Where most autism books jump right in and talk about the details of autism from the inside, this book remains firmly outside the circle, keeping the outsider’s viewpoint. To be honest, the opening chapters reminded me a lot of “Autism speaks” literature but don't worry, it gets a lot better from there. The book is trying to speak to outsiders and it needs to use concepts that they can understand.

This book talks about high functioning individuals but it feels much more like a book for families with more difficult and more "hands on" forms of autism.

The book starts with a "welcome to my world" chapter,  I can't tell you how many times have I my wife utter that particular phrase to extended family member. Following this is a section on grief, particularly grief following an initial diagnosis. This chapter walks you through how each of the stages may present in different individuals with good advice and cautions on what to say and what not to say.

Other chapters cover Grandparents, making particular note that their frailty can often preclude their direct involvement with very active children with autism but at the same time making it very clear how they can support their families. For example, via financial assistance or by taking a grandchild without autism out to allow the parents to concentrate on the child who needs more attention.

There are chapters which cover siblings from various points of view including; how outsiders can interact with siblings to reduce sibling rivalries or jealousies. Older sibling relationships are also explored, particularly aunts and uncles who may need to help out their adult brothers and sisters when dealing with a child with autism gets too much for them.

Other parts of the book cover step-families and blended families, close friends and cousins. The book closes with a chapter on holidays, covering sensory overload, careful decorating, minimising noise and smells and providing safe areas for individuals with autism.

All things considered, “Autism and the Extended Family” does exactly what it says on the cover, it provides a good guide for people outside the immediate family, to help them to understand what is going on and how they can help. 

At 125 easy-to-read pages, full of great case examples, it's short enough to read cover to cover in a couple of hours.

If someone in your extended family has just been diagnosed with autism, this is the book to get - for yourself, not for them. There are many better books on autism which are more suitable for parents and people with autism but this is probably the best resource for members of the extended family.

Autism and the Extended Family: A Guide for those Outside the Immediate Family who know and love Someone with Autism by Raun Melmed M.D. & Maria Wheeler M.Ed Is available from Future Horizons, Amazon, Barnes and Noble and the Book Depository.

Honestly clause; I was provided with a copy of this book free of charge for review purposes.