Whitterer on Autism

Too busy to join in, but this one certainly gets my vote.  They certainly have some useful tips and it was worth visiting just to see that stunning cake – although I’ve no immediate plans to divorce.

Additionally, check out this site self soothing for a quick refresher, especially since everything they suggest is free.  Or here on Psycke with it’s sensory emphasis.

Got to dash, off to walk the dog.

A Primer for Parents and Professionals

In his introduction, Richard Bromfield encapsulates the essence of complexity that is Asperger’s syndrome.  This lets us know, as parents, that we can trust his advice.  His words set the tone and flavor of his approach when he writes:-

‘These children frequently smash through the glass ceilings that authoritative professionals have predicted for them.’

I enjoyed this discrete paradigm: the child, parent and teacher.  Although Richard acknowledges the impact of the deluge of other influences from therapists to peers, he restricts his remit to a manageable 170 pages.

To me, the choice of title seems a curious one–why would anyone NOT embrace Asperger’s?  Certainly, over the years I have met a great many children with Asperger’s syndrome as well as their parents.  As often as not, these parents are forthcoming about their children’s diagnoses, strong advocates, who are proud of their children’s achievements, talents and gifts.  Most of these children are mainstreamed although I would hazard a guess that this is primarily because these is no suitable alternative program.  There is no good fit available.  And that is the unwritten secret of this book, which also accounts, in part, for Bromfield’s patient and compassionate approach.

Most teachers have a heavy workload, more so, in the current economic climate.  Class sizes grow.  Resources shrink.  And then, teachers are expected to expand their skill set to accommodate and teach a wide spectrum, one or more quirky kids, some with learning difficulties, ADHD and maybe Asperger’s.

Teaching is a vocation, a fact reflected in their salaries.  They want the best for their students, all of them, but some are more difficult to engage and motivate.  This is where Bromfield steps in to demonstrate how teachers can intervene to promote successful learners.

There are so many useful bullet points here, one-liners that once grasped could make all the difference in a child’s life:-

-  Don’t take it personally

-  Assume anxiety exists

-  Model acceptance

-  Do not turn away from depression

But I won’t give too much away.

Bromfield’s hands-on experience shines throughout this book; his insight is sure to prove invaluable to many readers.

I do have one criticism, something easily amended on the next printing:-  give me an index!  [please]

Available from JKP and Amazon.

Deborah Lipsky, the self dubbed Raccoon Lady, has written a must read for people like me.  People like me with children on the spectrum are apt to sit on my children’s shoulders and try to examine the insides of their heads.  It is a less than perfect arrangement.  More often than not, what with the speech delays and such, my translations are usually just my best guess with a dollop of wishful thinking.

So here, Deborah provides great insight into the thought processes and thinking patterns applicable to many people on the spectrum.  Her perspective may not be unique, in that there are lots of other autistic people with similar viewpoints, but the trouble is that not enough of them have written a book about it to enlighten us.  So here is the opportunity.

I particularly warm to her distinction between a meltdown and a tantrum, but that is probably because I agree with her.  You may well think otherwise, as you are entitled to, once you have read the book.

Her insights, tips and approach should prove invaluable to many, but for me, I was particularly interested to read about the interplay between anxiety, OCD, stress and how these elements can affect someone in their adult life.  Her account provides ample evidence about the importance of intervention early in life, to provide our children with as many coping mechanisms as possible, as well as the need to teach and practice flexible thinking.

I was delighted to read about Deborah’s challenging and fulfilling life, which I’m sure will prove inspirational to both parents and autistic children.  It would be far too sweeping to say, ‘Nothing holds you back except the limits imposed by yourself,’ but the impulse to self-censure is a commonplace part of the human condition.

p.s. lastly, I would like to add a request, namely, that a sequel might look at another black and white issue:  depression, autism and the mire of inertia.  How can parents intervene effectively?

Available from JKP.

And you can visit Deborah Lipsky here.

P.s.  Added later – thanks to Trish for this link where you can hear and see Deborah lecture where you can get a flavor of her wit and wisdom.

By Rob Willson and Rhena Branch

It’s all about me:-

Here’s a gem I came across which is proving very helpful for the perfectionists amongst us.

This is my rendering of their illustration which is simple enough to reproduce for your own version.

Yes it is a bit small but if you look carefully you will see that the capital ‘I’ is made up of many, many little ‘i’s.  This is great for the visual learners amongst us and goes to illustrate the principle that each of us is made up of lots of different little bits that go together to make a whole person.

Hence, when one of those little ‘i’s falls out or proves itself to be less than perfect, there is no need to have a  meltdown because all the other many pieces are still in tact. It is not the end of the world.  This picture can help with perspective taking, the big picture rather than focusing all attention on one minute blemish.

Alternatively, the imperfection once identified, is most probably less than 1% of the whole.  [wise parents count to make sure there are indeed one hundred little 'i's.]  This can help calm down those who have a tendency to catastrophize a situation.

It can also be used by printing off a fresh sheet every day and then marking each hic-cup with a pen or sticker, then even if you happen to experience a really tough day, the majority will remain unmarked.  Over time, say a week, a child can then see the progress they’ve made – this is especially good for perfectionists who are also pessimists and provides visual feedback or proof of improvement.

…….and still alive to tell the tale!

By Rob Willson and Rhena Branch

Many moons ago I would arrive in the kitchen to find my mother slaving away over a hot oven.  This would occur frequently, often early in the morning before I was really awake.  If I asked, ‘what are you cooking for supper,’ she would usually give the same answer, something along the lines of ‘I’m not sure…yet.’  I would look at this menopausal mother in her 1970’s caftan, ruler of my universe and wonder how this could be?  Her hands were busy, her body moved about within the available space and she spoke and yet she made no sense at all.

Forty [plus] years later, it seems unduly harsh to criticize this woman knee deep in sautéd onions and hot flashes, but now, it seems to me that this would have been the ideal time to grasp what we now call a ‘learning opportunity.’  She might have said, ‘there’s this book that hasn’t been written yet because the authors haven’t been born yet, but in the future you could learn to accept that there is a whole slew of things over which you have absolutely no control.  If you learn that now, your life will be a whole lot happier.’  So if, like me, you find that as a parent you spend a great deal of time telling your autistic child the same things many, many times, just be assured that you’re on the right path, not matter how futile it may sometimes seem.

This book may seem an odd choice for parents like us, after all, we’ve been dealing with variations on a theme for some while now, what else or more could we possibly learn from such a self-help book?  The answer, for me at least, is quite sobering and twofold.  Firstly, it’s an acknowledgement that our children are growing older and we are still dealing with the same underlying issues.  Although they are coping much better, better than we could possibly have ever imagined, nonetheless, the underlying difficulties remain stubbornly in place and more importantly, they will probably stay there long after we are dead and buried.

This may seem a little gloomy, but it doesn’t necessarily have to be so. What it means is that we need to update our skills as parents so as to deliver a different set of coping strategies, those better suited to an older person with greater cognitive abilities.  Star charts and tick down schedules are all well and good, but children move beyond such motivators and develop different skills.

I did learn something new.  I learned about NATs:- Negative Automatic Thoughts.   These are thought which enter your mind automatically, immediately.  This is something we have been tackling forever, but it’s a slightly different approach.  In the realm of autism we tend to describe this how we perceive it as parents: rigidity, inflexibility, a desire to maintain a strict routine, a resistance to anything that deviates from a well-worn regime.  Do you recognize it now?  I certainly do.  When they were younger we tackled this in a variety of different ways but surprise, surprise it’s still there, writ large.  This is just a different way of tackling the very same issue and I was grateful for the reminder.

If you take the acronym NAT and add a G for ‘General’ or ‘Global’ then you have GNAT – which is much easier to remember.  Take some time to explain the concept, that those negative responses need to be curbed, but first they need to recognize what they’re doing.  Quite often it’s become so ingrained that it just blends in.  Then, every time someone says something negative, a first response, without any thought because it’s automatic, you can ‘snap that GNAT and be a smooth, cool cat.’  I snap my fingers at the same time, as it’s more likely to catch their attention.  Pretty soon, I found out just how frequently this occurs.

Yes, it’s only the first stage:- recognition.  What to do about it thereafter, replacing it with more proactive and helpful strategies, comes a bit later.  Clever people can problem combine both strategies at the same time, but for now, we’re still working on it.

More later.

The Science, Art and Practice of Mindfulness.

I began reading this book initially to help my children but as it’s turned out it was also quite helpful to me too.  For the moment I don’t really have the time to squeeze meditation into my current life style, but it’s certainly given me quite a lot of material to think about and lots of tips to use with the children to help them move less painfully into their teenage years.

The book is an easy read and peppered with instances of unhelpful thought processes and examples of how to alter them.  I imagine that many parents of autistic children have already mastered many of these techniques but around here we needed a refresher course on how to tackle negativity and defeatism.  In the high octane world of autism and Alzheimer’s I need all the tricks and tips I can get.  When I read the ordinary, everyday kinds of negative concerns of other people, I found it quite reassuring, but I expect that’s just a spectrum thing.

To give you a flavor of the book, the authors retell a story which I also found here

Two Wolves

An old Cherokee told his grandson that a battle that goes on inside each us.
The battle is between two ‘wolves’.
One ‘wolf’ is Evil. It has anger, envy, jealousy, sorrow, regret, greed, arrogance, self-pity, guilt, resentment, inferiority, lies, false pride, superiority, and ego.
The other ‘wolf’ is Good. It has joy, peace, love, hope, serenity, humility, kindness, benevolence, empathy, generosity, truth, compassion and faith.”

The grandson thought about it for a minute and then asked his grandfather: “Which wolf wins?”

The old Cherokee simply replied, “The one you feed.”

Everybody seems to have stressful lives these days and many of the mind strategies should help us all keep a bit more grounded.  In many ways it reminded me of a catechism although obviously more modern and secular.  Maybe mindfulness, emotional intelligence and spirituality have become the new religion.

As the authors quote Henry James:-

“Three things in human life are important.  The first is to be kind.  The second is to be kind.  And the third is to be kind.”

And you can buy it at Amazon and elsewhere.

I’ve never been very good at psychobabble but many of us have moved ahead of the guidance in books such as How’s does your Engine Run by the Alert programme and The Incredible 5 point scale as our children grow older.  It’s not that we don’t use them any more, it’s more that there are new and different challenges to help them overcome, a variation on a theme.

First up I’ve been reading Understanding Myself, A kid’s guide to intense emotions and strong feelings by Mary C Lamia.  This is great for young people and around here it helps reinforce the use of language to label and understand the emotions that bubble up along with the hormone surges.  The content may need to be adapted to grasp some of the concepts but overall this is a great ‘next step.’

For my children I’ve not read the whole thing to them nor expected them to read it themselves since this would not be a preferred topic, however, tackling one particular emotion at a time makes the pill more palatable.

We’re also dealing with more grown up issues that some people encounter as their world view expands.  In this realm I’ve found Don’t  Panic by Reid Wilson extremely helpful.  For me the counter intuitive and obtuse approach is difficult to stomach, but guess what, it’s a perfect match for logical thinkers who don’t seem to experience the same struggle.  This is written for an adult reader but the underlying concepts can be adapted to better meet the complex needs of younger people.  I particularly like the ‘don’t fight it off’ approach as we already know from personal experience that that’s an approach which merely feeds the fear.

In addition, Fully Present by Susan L Smalley and Diana Winston helps provide a more rounded approach to who we are and accepting our foibles in the big bad world.  I’ll let you know when I’ve finished.

Dietary Interventions in Autism Spectrum Disorders: Why They Work When They Do, Why They Don’t When They Don’t.

By Kenneth J. Aitken

Available from JKP and Amazon.

There is a great deal to praise about this book: the format, the style where science is both readable and comprehensible, the facts, the theories and claims, and a hefty dose of reality.

The author makes it clear from the beginning that his book not a weight loss book nor does it tackle the behavioral issues in food avoidance.  The fact that he guides the reader to Ernsperger and Stegen-Hanson [Just Take a Bite] assures me that knows what he’s talking about.

What I found most alarming was the startling information about how very few studies there have been about dietary interventions and even more shockingly, how small the sample populations were – just 237 candidates for the CF-GF diet – and how many people do you know who have adopted this diet?  Furthermore and more worryingly, the candidates are self reporting their results, or rather to be more accurate, their parents are reporting the results.

At the beginning of 2011 many people will be considering dietary interventions for their autistic children, in which case, this book is a must read.

It has been my opinion for quite some while that since so many of our children have appalling diets that just about any addition to their limited quota must have a beneficial effect.  I used to envy other parents embarking upon some new miracle diet with their children while we pushed a Goldfish cracker around the plate and washed it down with his second food, milk, with the hope that at some time during the next 24 hours we’d manage to persuade him to eat dessert, maybe a single raisin, his third ‘food.’  But of course that was a long time ago.

I would love to claim sole credit for my desensitization and multiple exposure plan of intervention, but unfortunately there are many other reasons for his improvement: therapists, teachers, aides, life, growth and the passage of time.

You can also read a very insightful interview with the author at JKP blog where I’ll share one of his best quotes:-

“Personally I don’t believe we should be waiting on the Holy Grail of a wonder treatment for everyone with ASD, however appealing this may seem to some. Some people with ASD symptomology neither need treatment nor want it.”

Like every other parent on the planet we trudge along the treadmill in a relentless quest for growth and development.   But for more than a couple of years we’ve also been pursuing an interest in telling jokes as someone has ambitions to be a stand-up comedian.

Sadly there are so many lessons to learn along the way: timing, delivery, audibility, diction, intonation, volume control and not falling on the fall in hysterics before the punch-line.

Generally our whole family favors knock, knock and elephant jokes but occasionally we branch out into other areas.  A birthday present gives us the opportunity to analyze even more aspects of this skill set but it is also the source of great frustration.

Gradually over a two-week period we achieve amazing progress, culminating in a small surprise for the world weary parent.

It is just after I have spent far too long modeling examples of what not to do that I have one last attempt at an up-beat demonstration of ‘how to.’

I ask him in fully operationally cheerleader mode, “What’s black and white and read all over?”

“A zebra with an explosive nose-bleed.”

A Book Review

This is a great book for anyone starting a journey of discovery following a diagnoses of autism.  It may seem curious at first to know that an adult, and in this case a parent, has been diagnosed with autism, but it is becoming far more commonplace than we might ever have imagined a few years ago, which makes this book especially timely.

Written with teenagers and young people in mind, Barbara writes with a casual, warm and approachable style which avoids being patronizing.  When she uses a term which may be unfamiliar to her audience, she also includes a simple definition of the word which greatly helps the flow and understanding of the reader.

The book is divided into chapters covering the primary issues which will be of interest and importance to any young person trying to understand their parent.  She writes sympathetically to both parent and child discussing many of the common concerns and worries of young people to aid understanding and empathy.

I particularly liked the style of worksheets in that they are brief and on point.  Also the idea that both parent and child work on the same questions and issues should be illuminating for both parties.

Barbara illustrates the text with examples of her own experiences with her ASD father which helps clarify the condition and provides ample proof that she has lived through, survived and thrived what many others are also experiencing.

My only issue with this book is the usual one:- how to reach the people who most need it?  In this particular instance, that may prove to be a diplomatic nightmare.

The books ends with a brief discussion about the stigma associated with autism but the finale, for me at least, was a worksheet where both parent and child can list their strengths – although there should be an extra blank page to allow for a run on : )

You can check out Barbara R Lester here.

Available from JKP.

I’m just about to try out one of her apps from itunes on depression since it’s a subject I know nothing about and have two candidates in different generations to practice upon.