Guest Post: Autism Spectrum Siblings Need Love and Guidance Too! by Trish Thorpe

The following is a guest post from Trish Thorpe, Author of "Fisheye: A Memoir" and "Asperger's Sibling Support: 15 Practical Tips for Parents/Caregivers".  Please take a moment to check out Trish's books.


Autism Spectrum Siblings Need Love and Guidance Too!
I'm 53 and the younger sister of an older brother (by two years) who had undiagnosed Asperger's while we were growing up (1960s and 1970s). My brother and I grew up with very unaware, self-involved parents. Short story...I spent years in therapy sorting through our family dynamics and learned so much about the kind of parental support needed to raise special needs kids and neurotypical siblings in a balanced home. 


Here are some pictures of my brother and me when we were young:

I'd like to share what I learned. I collaborated with my therapist and wrote a series of tips that will hopefully help parents and caregivers understand and support ASD siblings. My goal is to raise awareness of the need for Autism Spectrum Disorder (ASD) sibling support (the often-overlooked piece of the ASD support puzzle).

Don’t Be a Superhero

If you’re constantly fielding complaints about the way you’re handling your Asperger’s child’s behavior, make it clear that you don’t have all the answers. Explain that Asperger’s is a fairly new diagnosis and that you and the professional psychology community are trying your very hardest to do the right thing. Point out that you’re keeping up with all the latest information about Asperger’s behavior. (It’s good for your child to see you adapting to change.) 

By admitting this, you’ll be offering a more realistic view of yourself as someone who is coping and learning on a day-to-day basis. You’ll also be conveying that you are not a superhero whose achievements are unattainable for the average person. This will hopefully open the door for your Asperger’s sibling to feel like they can make a positive contribution.

Justify Household Rules

You probably find yourself constantly explaining why the rules and expectations are different for different members of your household. For example, maybe your Asperger’s child gets to spend extra time on the computer and/or less time doing homework. Explain to your Asperger’s sibling why it’s happening. Explain that their brother/sister does homework with a special teacher at school and therefore doesn’t have as much to do at home. 

This will hopefully dispel any claims of unfair treatment. If not, continue explaining that extra time on the computer might help their brother/sister develop skills needed to live as independently as possible, which could benefit the whole family. If you explain it as being an advantage for the entire family, that may allay any claims of favoritism. It will also help your Asperger’s sibling feel like you’re entrusting them with special information.

Show Compassion

Create an environment of compassion for differences in others. Try to model a positive perspective by always pointing out the constructive traits of having Asperger’s Syndrome (enthusiastic, conscientious, free of prejudice, honest) instead of dwelling on the negative. Here’s a link to fifty positive Asperger’s traits. 

Children mimic their parents. The way that you view and project the attributes of your Asperger’s child can be an example of strength and resiliency for your family members. They will follow your lead. 

Remember that your Asperger’s sibling will have to deal with many different people, personalities, and temperaments as they navigate their way through life. Learning compassion from your love and guidance will benefit them greatly.

Create Personal Space

Your Asperger’s sibling needs to feel entitled to their own belongings and their own private place in the world. This will hopefully reinforce the notion that they are a complete person separate from their role as an Asperger’s sibling.

Find a spot in your home that they can call their own. It doesn’t have to be big. It can even be as simple as a shelf or a drawer. Just something that is solely theirs. Make sure that both siblings understand the boundaries.

Explain That It's Nobody's Fault

Watch for hints that your Asperger’s sibling is blaming themselves for their sibling’s Asperger’s. If you suspect there is any doubt in their mind about the cause of Asperger’s, reiterate that it’s simply something people are born with and that it’s nobody’s fault. You can say this as a general statement; it doesn’t have to be in reaction to something else. Just say it out loud, more than once, and it will sink in eventually.

I hope these tips are helpful. There are more. They come from the heart. Would love feedback about whether or not they make sense for everyone. 

Trish Thorpe, “Asperger's Sibling Support: 15 Practical Tips for Parents/Caregivers” is available from Amazon.

Jobs for Aspies: Acting

People with Aspergers Syndrome often spend their whole lives trying to fit into society.  They copy mannerisms, accents, expressions and dialogue.  They also often enjoy making noises such hums, clicks, whirs and other sounds.  It's a stimming thing.

In short, people with Asperger's syndrome often spend their lives practising acting and they can become very good at it.

There are many people in Hollywood with Asperger's Syndrome or suspected Asperger's Syndrome. The lists includes; Daryl Hannah, Dan Aykroyd, Tim Burton, Woody Allen, Michael Palin, Alfred Hitchcock, Jim Henson and Michael Jackson. I doubt that we'll ever know the truth about these actors for sure but one thing is clear, children with Asperger's syndrome often make good actors and they can benefit significantly from acting classes;

There's a video on YouTube where a boy with Asperger's Syndrome; Zach Henry and his family discuss the impact that acting has had on his life.

It's well worth a watch.

Click here to watch the video

Other Posts in this Series
Jobs for Aspies - Project Management

Related Posts
How does Aspergers Affect Employment Prospects?
Improving Employment Prospects for Aspies - Part 1
Improving Employment Prospects for Aspies - Part 2 (What the Aspie can do)
Improving Employment Prospects for Aspies - Part 3 (What the Employer can do)
Aspergers Syndrome and Acting

Book Review: Plan B: Empowering the Single Parent by Karra Barber-Wada

Plan B: Empowering the Single Parent! 
... To benefit their Child with Autism 
by Karra Barber-Wada.
Published by Future Horizons
ISBN 978-1-935274-79-7

Plan B is a book with a well defined and very specific target; single parents with children who have autism. It's written in a very positive way and contains a lot of very good advice, all of which falls neatly under a very clever strategy; called "plan B".

The book is very well laid out and is easy to read with lots of clear sub-chapters. There are regular tips sections and some great real life story asides which show the techniques in action and put a human face to the book.

Some chapters have minor exercises designed to get you to focus on your priorities, budget or wants and needs.

The book seems to be geared more towards the "higher functioning" types of autism, such as Asperger's syndrome but I have no doubt that the techniques within it are more or less universally applicable. It also spends most of the time dealing with single parenting due to divorce but it has a section dealing with the death of a spouse. It's a book which comprehensively covers its subject area.

The main sections of the book are a long  introductory area which sets up many of the key concepts, then chapters focussing on effective co-parenting, finances, life balance and preparing your child for adult life. That last chapter is very good and covers some things I haven't seen in an autism book before, particularly the use of social mentors. The book concludes with an excellent "frequently asked questions" section.

It's pretty clear to me that every parent in the target group should read this book but I think it's useful for married couples too, especially if you're in a situation where one parent is considerably less engaged in raising the child than they should be.

I have no hesitation in recommending this book to people in these circumstances or to those who support them.


"Plan B: Empowering the Single Parent! ... To benefit their Child with Autism" by Karra Barber-Wada is available from Future Horizons and from Amazon.


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

In order to Receive Empathy, we must first Teach it - Part 2

Following on from my previous post on teaching empathy, my wife had taught me to help, without being asked when a person with a pram obviously needed help. I was able to generalise this to helping people who clearly need help in all kinds of situations.  

It took me years but I consider myself mostly reformed in that area now and I'll help people who stumble, who get wheelchairs stuck or who can't reach items on the top shelf of the supermarket. All without being asked.  I've even reached the point where I can anticipate a problem and will watch an unsteady person, or a toddler near a road in case they suddenly need intervention. 

My wife did a very good job of reforming me in that regard.

Unfortunately, even though I widened the scope of the "help" intervention considerably, it doesn't automatically put me into a good empathetic state. There are still so many situations to learn about and each time I manage to choose the wrong option. It's simply because I haven't learned to deal with these different situations and I need to be taught.

Being There
My next really big lesson on empathetic reactions came with the birth of our first child.  I'd done my bit of the work (impregnation) and I thought I was doing pretty well by attending birth classes and reading books.  It was certainly more than most of the men in my life had done.  I left the obstetrician appointments apart from a couple to my wife becauase I thought there wasn't a whole lot I could contribute.

I'm also a bit of a workaholic and truth be told, I'm generally too scared to ask for any time off.  At the time I'd only just started a new job too.

The birth of our first child ended up being a very traumatic event in which nearly everything went wrong. It wasn't helped by the fact that I didn't have a good rapport with the obstetrician or that the right questions hadn't been asked in the visits because my wife was too emotional at the time and her "rock" was at work instead of by her side where he needed to be.

Things improved significantly when it came to our second child and I made pretty much every appointment (though usually only by minutes).  We also changed obstetricians as we pretty much realised that our first one was not right for us.

How is this empathy?
Empathy has many meanings, all of which are valid and none of which are comprehensive enough to properly cover this elusive topic.  In order to show empathy, one must interpret a person's actions and infer their emotional state, identify any needs (such as my wife being emotional and needing a person to be there to listen and ask questions) and then act upon those needs - actually be there.

It's a complex set of tasks.

Generalising
This is a difficult one to generalise but essentially the rule is that if your partner, friend or family needs you to be somewhere for them, then the correct empathetic response is for you to be there.  Work is secondary.

I know that we all have to earn a livelihood and I know that some employers are less tolerant than others but as employees, we have certain rights and those rights are there to allow us to provide support in times of need.

This brings me neatly to the reason I started these posts in the first place (see my introductory post). We had a sudden very urgent need for child-minding and my own family gave me excuses.  It's a let-down which we still haven't recovered from but I do understand.  Sometimes when we're put on the spot, we make the wrong choices.

It was this wrong choice which got me thinking about how I learned the correct empathetic responses and who I learned them from.  It helped me to understand that empathy is not something we're born with, it's something we've been taught.


Anticipating and Reacting
The clue that you've not been empathetic when you should have been usually comes in the form of an extreme emotional reaction from the other person.  If you get this reaction, then you should probably spend some time thinking about what the other person expected/needed and why what you gave them did not address those needs. This is the crux of empathy.

When you've figured out what needs to be done, then you should try to re-establish contact with the person (if it's a family member or friend) and offer what is needed.  Don't make excuses, just offer what is needed.

Remember, as a parent, it's your duty to teach your children to empathise and the best way to do this is by example.

Replying to a Parent's concern about the Traits of Asperger's Syndrome

Normally, I don't post correspondence here as I like to keep those things private and individual but I recently got an email from a parent who was concerned about a number of traits her son was showing.  I've replied to her questions in prose and as I was reading it back I thought it might be a useful thing to post, so... all identifying information removed and lots of extra links added, here it is.

Eye Contact

Inconsistent eye contact is generally a sign of "gaze avoidance" - ie: lack of eye contact. Darting ones eyes around the room during a conversation is a great avoidance tactic as it gives a person a break from being totally focused on the speaker - something which is quite painful at times. Some children with Asperger's syndrome give good eye contact but most do not.  You might want to encourage your son to look at mouths instead as this keeps his head pointing in the right direction and reduces eye-darting without making uncomfortable eye contact.

If he does have problems with eye contact, you shouldn't attempt to push him towards it.  It's a very uncomfortable thing.

Links:

• A Recent Experiment with Eye Contact
• Aspergers and Eye Contact

Empathy
Contrary to popular opinion people with Asperger's syndrome do actually have empathy and in many cases have far more empathy than neurotypical people. The problems lie in communication.

1. Understanding that someone is feeling different
2. Communicating empathy.

You described an incident where your son showed empathy by hugging.  This is not unusual.  If your other son showed an obvious sign of pain (crying for example) and there was an obvious reason, such as a fall or wound, then giving him a hug is a clear and obvious response.  My children do this all the time. The most obvious "lack of empathy" comes when children don't show empathy if, for example, someone is feeling "down" for an "invisible" reason.

Links:

• In order to Receive Empathy, we must first Teach It.
• Learning to Empathize in the Moment
• Barriers to Empathy
• Emotional Reciproty
• Empathy and Perceived Empathy
• The Autism Devotion Project (how children with Autism Show Empathy)

Obsessions
These are common with all kids but much more so with people with Asperger's syndrome.  I've spoken to psychologists about Minecraft specifically and everyone I've spoken to has noted a massive increase in obsession.  Something about the minecraft game appeals directly to many people with Asperger's syndrome.  Obviously being on the computer all the time is unhealthy and you'll need to find ways to moderate it.  In our case, we send our boys to scouts as this gives them some necessary life skills while also putting them into social contact with a group of kids who aren't from the same school.

Links:

• Drawing the Line on Media Access - Part 2 Computers and Books
• Why is Scouting Particularly Suitable for Children with Asperger's Syndrome

Conversation
Monologues are a part of obsession and again Minecraft is a very common topic. We've had many. Too many.  Not wanting to be interrupted is common too and it's hard for children with Asperger's syndrome to understand that not everyone shares the same level of interest and enthusiasm.  Of course, nobody speaks in monologues all the time and children with Asperger's engage in "normal" back and forth conversation too.

Monotone voices are common too and I can't really explain what the reason is for them. I suspect it has something to do with the fatigue generated by incessant talking.  Your son should be capable of talking with various inflections but probably not during monologues about minecraft.

Links:

• How to Prevent the Aspie Ramble

Friendships and Solitude
People with Asperger's syndrome often have difficulty paying attention to multiple sources.  This means that when they're in a group, there are "too many voices". They have difficulty relating to large groups of people and will often shun social occasions such as parties.  Small-talk is also difficult, so having a single friend with which you have both a good rapport and shared interests is much better.  I have three friends who I went to school with. They are my best friends and really my only true friends. We've known each other for nearly 30 years.  Throughout my working life, I've made acquaintances but I'm always confused when they want to be friends.

Alone-time is a well documented Aspie need and often the best friend a person with Asperger's has is himself. It's quite common to talk to yourself, particularly about your interests. The idea of the conversation is not to impart information but to enjoy the sensation of talking about an interest and to explore new ideas and concepts.  In time, your son will learn to keep much of than conversation internal to avoid public scrutiny but it won't stop - it will just become less visible.

Links:

• Finding Conversational Balance - Compromises for Alone Time and Social Time

Sensory Issues
These are extremely common in everyone with Asperger's syndrome.  Some will reduce over time but others will last forever.  There are two types of sensory issues, and you've noticed both but probably don't realize that they are two sides of the same coin.  Some sensory experiences detract while other attract. This means that some things, such as labels, noises, smells and lights will cause your son discomfort while others will actually be enjoyed - and sought out. This "enjoyment" of sensations is called stimming and it's where rocking comes into autism. You might not realize it but echolia (repeating phrases from TV and movies - or prior conversations) is actually an enjoyed sensation, a form of stimming.

Links:

• What is Stimming and What does it feel like?
• Echolia - Should you try to Stamp it Out?
• What is Stimming and Why is it Important?
• Sensory Impact on Eating
• Visual Stimming, one of the reasons why your child is pulling faces.

Co-conditions
There are many co-conditions with Asperger's syndrome and OCD is one of the most common. Change resistance and the need for a rigid schedule are different facets of OCD and it's very normal for them to occur together.

Links:

• What is Asperger's - My Perspective Part 4: Co-Conditions
• Patterns Everywhere
• What are Comorbid Conditions and how do they fit into Aspergers?
• Don't Underestimate your Children's ability to cope with Change

Social Issues
People with Asperger's syndrome have lots of social issues. These are mainly due to miscommunication such as misunderstanding of "common" trite phrases, misreading of facial expressions and tones and missing other social cues such as dress codes.

At the same time, there are problems caused by a misunderstanding of social behavior  For example; it's a nice day, the sun is shining and the birds are singing - and yet most conversations start with a pathetic statement of the obvious; "It's a beautiful day isn't it?" or "lovely weather we're having". Your son will eventually learn that most conversations start this way but he won't understand why.  He will most likely consider this to be "silly behavior  and even though he understands the reason, will not engage people that way.  After all, it makes sense to him to get to the interesting part of the conversation, minecraft for instance.

Finally there are those little white social lies that we tell each other every day.  "How are you?" we are asked, to which the general answer is "fine." - even if you're not fine.  Then there's the question, "What are you thinking about?".  There are many answers to this but "nothing" is usually a preferable answer to "minecraft" particularly if you're in a social, emotional or religious situation.  People with Asperger's syndrome often find lying very uncomfortable because it goes against a major rule "no lying".  This often means them to act like they have "no filter" and tell everyone, everything.

Links:

• Aspie Barriers to Social Interaction
• Accepting the Child who doesn't Engage during Play
• Aspie Kids and Lying - The Fantasy World
• Do Aspies make good Liars?

Depression and Anxiety.
Depression is a common trait in people with Asperger's syndrome. How could they not be depressed when the world doesn't understand them, doesn't connect emotionally to them and doesn't understand the things which drive them. Your son will be finding that for some reason he registers as "different" to his classmates and that he's often excluded or considered "annoying" for reasons he doesn't understand.  He may like the academic side of school but hate the social interaction of his peers.

Depression often goes hand-in-hand with anxiety, for the same reasons.  If you're dreading an interaction with your peers or a particular class or lunchtime social, then you become anxious even thinking about it.  Fleeing from the school may even become an attractive option.

Links:

• Aspergers, Depression and Children - an Example
• Calming Techniques for the Special Needs Child
• Anxiety in Cub Scouting - Some things we'd like to tell Parents
• Social Anxiety Every Day
• Aspergers and Depression  Part 2  Part 3  Part 4

Concluding...
Don't be too concerned about Asperger's Syndrome as it's not necessarily bad news. Most of the greatest thinkers and innovators in history have had Aspergers Syndrome - and plenty more people whom you haven't heard of have made spectacular contributions to society or to their workplace.

Links:

• The Myth of Aspie Genius
• Hyperfocus and Aspergers
• What Asperger's Syndrome has done for us
• Are there eight different types of Aspergers?

The important thing to remember is that your son is unchanged by any label you apply to him. He's still the boy you've raised. A label will simply help him to get more funding and support - and eventually, to better understand himself.

Links:

• What is Asperger's - My Perspective Part 3: Labels and Tables
• The Human Side of Aspergers: How Aspies feel about the Label
• The Asperger's Brand - Getting the Label
• My thoughts on the Changing Asperger's Label

That "Blue" Day

Today is April 2nd. It's the international "Autism Awareness Day". People are encouraged to wear blue to show their support of this "awareness" and many bloggers will post every single day throughout the month to raise "awareness".

I'm not one of those bloggers.

My posts will come out as and when I have relevant and useful material to contribute.  

It's rare that I interrupt a series of  posts for a specific event but I thought I should talk about the whole Autism Awareness thing.

I'm all for the world understanding and accepting and loving people with autism - in fact, I'd extend the whole courtesy to people without autism too. To cats, dogs, mice, lizards and plants.  I suppose that it's a nice gesture but to me, the whole blue thing is as irritating as those "baby on board" signs. You know the signs on cars that make you wonder what you're supposed to do?  Cooo as you go past? Offer milk?

The problem with the whole "Autism Awareness" thing (and it's called other names too; Autism Appreciation, Autism Acceptance, Autism Bubble Day etc), is that it's all about the condition - not the people.  No, I'm  not suggesting that we call it; "Person with Autism Awareness Day" because that would be both pedantic and superflous.

Instead, I'm suggesting that we make it more useful. Why not make it "Do a deed for a person with Autism" month. Just one deed, that would nice.

Ideas could include;

• Encouraging or motivating a person with autism.
• Giving someone a chance in a job interview
• If you're a teacher, maybe talking to the class about the positives of autism
• Providing support to a family with a member with autism
• Spending some time as a friend with someone with autism
• Listening to someone with autism

Instead of spending the day telling the world that if a person has autism, others have to "grit their teeth and just accept it", why not spend the day helping a person with autism forget that they live in a world in which they are considered an underdog.

In order to Receive Empathy, we must first Teach it - Part 1

I grew up in a household where we were encouraged to keep ourselves to ourselves. If someone asked for help and we could give it, then we would - except if that help was deemed "too much work" or if that person was considered a "crazy person".  We would never offer help though - not without being asked because it was the job of the "helpless" to ask for support.

"Crazy people" were drunks, "druggies" and older, senile people. We never helped them unless we were cornered into it - and even then, the help that was given was only ever a means of escape.  These days of course, I recognize that these are terrible and callous attitudes to have but suppose I hadn't been taught that. Would I be the same today?

I remember my mother picking up an old woman in the car. She made it clear to us before picking the woman up that she was a "mad woman" and my sister and I sat in the back seat fearing for our lives.  We later asked her why she picked the lady up when we didn't know her and were told that she had jumped in front of the car.  She was given a lift because we were given no option. It didn't help our feeling of well-being when I asked about a scarf that the woman was wearing only to be told that she needed it or "her head would fall off".

I think it goes without saying that I grew up not understanding much about "poor people", misfortune and life on the edge.  Since I couldn't understand such people, there was no way I could "put myself into their shoes" and as such, I lacked not only the proper responses but empathy itself.

First Steps
It wasn't until I was much older, in fact, not until I'd left school and was out with my then girlfriend (now my wife of 16 years), that I started to make my first steps in the world of empathy. We were out shopping and we saw a young mother with a pram trying to get down some stairs. There were other people around her but they were ignoring her, just as I'd been taught to do.

My girlfriend told me to go and help but I said we couldn't until the lady asked for help.  We got into a bit of an argument which ended abruptly when my girlfriend went over and volunteered my help to lift the pram down.  We helped her and the lady was grateful but I still couldn't understand why she hadn't followed "the rules" and asked for help first.

I remember resenting the fact that I'd be been volunteered like that but it was the first of  many such lessons. They were lessons that I needed to have and I value my wife's input on these greatly. One of the big differences between our families was that hers was "conditioned to help" from a very early age while mine was not. I can't blame my parents entirely for that either because those values certainly passed to my mother from her own mother - and although she was a wonderful person to me, there are some terrible stories of injustice there too.

Today, the experience and parenthood itself has changed me.  Today I'll automatically help someone with a pram down stairs without being asked. I've learned.  At least, I've learned about "that" scenario but there are many others which are still new to me and these don't get automatic reactions when they should. From my point of view, I just have to keep an open mind and listen to my wife and mentor.

I'll discuss this in more detail in part 2.