A diary of our family's house building project in the Blue Mountains, NSW, Australia. Also my ponderings on family life, living with Asperger's Syndrome, running an ebay business & a place to share my photography.

Thursday, 11 December 2008

Asperger's Syndrome

This is LONG.  If you are not interested in Aspergers Syndrome, don't bother continuing!
My friend Simone who has a son Xander in Finn's early intervention programme emailed me 2 weeks ago to ask me to print the following for her as her printer isn't working. 
I only had the chance to read it tonight & I was quite blown away by the truth in it. Only a parent who lives with this could write like this. 
It is directed to grandparents, which is a nice idea, but that is not why I'm publishing it here. 
I'm sharing this with anyone who may be interested in what it may be like to live with a child with this condition & how they may be able to connect with such a child, grandparent, family, friend, teacher,anyone. It bought me to tears as I read it, this is written by someone who KNOWS.  Living with Aspergers has been very isolating.  We are still coming to terms with what it is, what it means & what we can do. We struggle every day to be the best parents we can & for me personally there is never a day that i don't feel that I failed in doing my best. Yes I know, I shouldn't be so hard on myself. But I am. When I became a parent over 17 years ago I found it quite easy. I only started to find it hard 4.5 years ago. I'm also having to come to terms with my own Asperger traits. It's no coincidence that I have 2 boys to 2 different dads with this condition. 

If your grandchild has been newly diagnosed, then welcome to the world
of Asperger Syndrome. It is a mysterious and sometimes overwhelming
world, but it is not one to be afraid of. Even if you are saddened,
disappointed or angry about the diagnosis, keep in mind that it’s for
the best. The earlier the diagnosis, the earlier the intervention, and
the better the prognosis in the long run.

For some grandparents, the news seems to come right out of the blue.
Sure, there were difficulties at school - but then, school isn’t as
strict as it used to be. And yes, there were some problems at home,
but none of them sounded like anything that “good old-fashioned
discipline” couldn’t solve. Why, then, do the parents seem to be
clinging to this diagnosis as if it were a life-raft in the high seas?
And why are counsellors, psychologists, occupational therapists and
special education teachers suddenly getting involved?

Is this child really so different?

As grandparents, you have a lot of questions to sort out. But along
with the confusion comes an opportunity to get involved where you are
really needed. Children with Asperger Syndrome have a special need in
their lives for ‘safe’ people who won’t criticize them or put them
down for their differences. They need loving, non-judgmental
grandparents who accept them as they are and make a place for them in
their lives. If you can reach out to them, they will treasure your
relationship with them for the rest of their lives.

*I’ve read articles about Asperger Syndrome. But I still don’t
understand what it is.*

Asperger Syndrome is a type of autism, and autism is a neurological
disorder that affects the way a person interacts with others and his
or her world. It’s not a mental illness, and it is not caused by weak
parenting. In its more severe forms, it’s a disorder because it causes
disorder in the life of the child. In its milder forms, it is more of
a marked difference from the norm. In our culture, which judges people
on the way they interact with others, these disorder-differences can
have a profound impact on a person’s life.

You’ve probably heard the parents complaining about the difficulties
they’ve had with the child in the home - obsessive behavior,
irrational outbursts, wild fears, and irritability over the smallest
issues. These problems are not misbehaviors, but rather the child’s
responses to an inability to comprehend what is going on around them
and inside them. Some experts have called it a “mind blindness,” one
that causes the person to stumble and bump into complex social
situations that they can’t “see.”

Yet by effectively “blinding” the mind to certain aspects of daily
life, Asperger Syndrome enables the child’s mind to focus in a way
that most of us are incapable of. They feel their feelings more
intensely, experience texture, temperature and taste more powerfully,
and think their thoughts more single-mindedly. In many ways, this
ability to focus is the great gift of Asperger Syndrome, and is the
reason why a great number people with Asperger Syndrome have become
gifted scientists, artists and musicians.

It is as if the Asperger brain is born speaking a different language.
It can learn our language through careful instruction or
self-instruction, but it will always retain its accent. While Asperger
adults go on to successful careers and interesting lives, they will
always be considered unusual people.

*I’ve never heard of it before.*

That’s not too surprising. Pediatricians don’t study it in medical
school, teachers don’t learn about it in education college, and the
mass media rarely covers it. Until the 1980s, the condition didn’t
even have a name, even though Hans Asperger’s original work was done
in the 1940s. It is only very recently that the condition has received
much attention at all. However, as professionals are becoming more
informed about the condition, they are discovering that there is a
fair amount of Asperger Syndrome out there.

You may remember an “odd” child from your grade-school years - one
that had no friends, who was always preoccupied with some obsessive
interest that no one else cared about, who said the strangest things
at the strangest times. Though the syndrome has only recently been
named, these children have been living and growing up alongside other
children for centuries. Some have become successful and happy as
adults despite their undiagnosed problems, teaching themselves over
time how to navigate around their deficits. Others have gone on to
live lives of confusion and frustration, never understanding why the
world didn’t make much sense to them.

With the recognition of Asperger Syndrome, we now can give a new
generation of Asperger children a chance at the same kind of life that
other children have.

*Great. So how do we fix it?*

We can’t fix it. Despite all the marvels of modern science, there are
still some problems that can’t be cured. Nobody knows what causes
Asperger Syndrome, though most scientists acknowledge a genetic
factor. So the deficits your grandchild has can only be understood,
minimized and worked around. They will require accommodating on
everyone’s part. But in time, with proper programming, the child’s
behavior and understanding of the world should improve.

Specialized therapies for autism disorders are available, but in most
cases, the parents must bear the full cost. This can cause tremendous
financial strain on the family. In addition, while most regions
require specialized programming for Asperger children, these programs
are rarely sufficient for the child’s needs. So the parents must fill
in the gaps with their own home-made programming.

Drug therapies are also sometimes available in cases where extreme
behavior needs to be controlled. But these drugs don’t treat the cause
of Asperger Syndrome. So even if some of the symptoms can be relieved
with drugs, the central problems still remain.

*A lot of kids have these sorts of difficulties. It’s just a part of
growing up, isn’t it? After all, he looks perfectly normal to me.*

He is normal. And he has the capacity to grow up to become a
wonderful, normal adult - especially now that he has been diagnosed
and is receiving special training. But he is normal with a difference.

The deficits that comprise Asperger Syndrome are not always readily
apparent, especially in milder cases. The child is usually of average
intelligence or higher, yet lacks what are essentially instincts for
other children. If your grandchild seems “perfectly normal” despite
the diagnosis you’ve been told about, then he is probably working very
hard to make sure he fits in - and it’s not as easy as it looks.

It is best to treat your grandchild for what he is - normal. But be
prepared to take some advice from those closest to him regarding what
is the best way to handle certain situations.

It may not look like much to you, but Asperger Syndrome is a cause for
concern. It’s not at all the same thing as the sort of developmental
delay that some children experience, and a professional trained in its
diagnosis can determine the difference. Certainly misdiagnoses are
possible. But in such cases, it’s always wiser to err on the side of
caution. The wait-and-see method is risky when there is evidence
suggesting a neurological problem.

*So what if she doesn’t do what other kids do? She’s advanced for her

Unchildlike behavior doesn’t mean that a child is “too smart” for
play-dough and playgrounds. Even if she is smart, she still needs to
learn the skills of play, because play is how children learn - about
things, about life, and about each other. Precociousness is cute and
is sometimes a source of pride for grandparents, but it is also often
an indication that there is an underlying problem that needs to be
addressed - and the earlier the better.

*If Asperger Syndrome is genetic, then does that mean we have it too?*

You might, or you might not. Usually at least one of the parents has
some Asperger qualities to their personality, and so it seems likely
that the same might be true of the grandparent generation.

But before you get defensive, remember that Asperger Syndrome
shouldn’t be regarded as a source of family shame. It’s a difference
more than a disorder. And we know it takes all kinds of people to make
the world go around. Many famous people are believed to have had
Asperger Syndrome, including Albert Einstein, Thomas Jefferson, Anton
Bruckner, and Andy Warhol. It seems a touch of autism often brings out

And that’s not such a bad thing to have in the family!

*What if I don’t believe the diagnosis?*

That’s your privilege. But keep in mind that the child’s parents
believe it. They live and work with the child daily and are in a
unique position to notice the deficits. Because they care deeply about
that child’s future, they aren’t concerned about the stigma of a
label, as long as it means the child is eligible for the specialized
programming she needs. They have put their pride aside for the sake of
the child and expect the same from the rest of the family.

Consider carefully what could possibly be gained by refusing to
believe the diagnosis. Then consider what could be lost. The parents
are already living with a great deal more stress than other parents,
and they don’t need the added strain of skeptical or judgmental
grandparents. Otherwise you may suddenly be faced with the pain of
being unwelcome in your grandchild’s home.

*The child’s mother looks exhausted all the time. Could that be a cause?*

It’s more likely an effect. Consider what her life is like: she has to
constantly monitor what is going on regarding her Asperger child,
thwart anything that might trigger a meltdown, predict the child’s
reactions in all situations and respond immediately, look for
opportunities to teach the child social behavior without creating a
scene, and so on - every minute, every day. So it’s not surprising
that she doesn’t feel like sitting down for a cup of tea with you and
making small talk!

The truth is that the majority of mothers of Asperger children
struggle with depression. While the special services she will receive
over the next few years should help in some ways, she will still be
the one to deal with the day-to-day difficulties of raising an unusual
child. For many mothers, this means ceaseless work, often to the
exclusion of their own needs. Their physical, mental and emotional
exhaustion can have a profound effect on the health and happiness of
the entire family.

For this reason, mothers of Asperger children need those closest to
them to give their full, unconditional support, both in words and in

*I’d like to help out and get involved. But my son and his wife always
get defensive no matter what I say.*

Your son and daughter-in-law are now so used to defending their child
that it comes as second nature. Give them some time. Once they are
more certain of your support, they will be less sensitive.

In the meantime, think carefully before you speak. Choose expressions
that suggest sympathy and genuine curiosity, and avoid those that
convey criticism. For example, instead of saying /‘He looks perfectly
normal to me’/, you can say /‘He’s doing really well.’ /Phrase ideas
as questions, not judgments by saying /‘Have you thought about…’
/rather than /‘It’s probably…’./

The most destructive things you can say are those that convey your
lack of trust in their ability to parent, your disdain for the
diagnosis, and your unwillingness to make accommodations. Here are
some real-life examples gathered from mothers of Asperger children:

/‘Just let him spend more time with us. We’ll whip him into shape!’
‘She may act that way at home, but she’s not going to do that in MY
‘He wouldn’t act this way if you didn’t work.’
‘I managed all by myself with four kids. You’ve just got two, and you
can’t handle them!’
‘Don’t believe everything those psychologists tell you. He’ll just
grow out of it, wait and see!’
‘There’s nothing wrong with her. You’re making a mountain out of a
molehill. Are you sure you’re not the one that needs to see a
‘He’s having all these problems because you took him out of school for
that home-schooling nonsense.’
‘Everybody’s got to have a problem with a fancy name these days!’
‘All you ever do is complain about how hard your life is.’ /

*Ouch! *

Keep in mind that parents of Asperger children face these hurtful,
humiliating attitudes every day - from bus drivers to teachers,
doctors to neighbors. Their tolerance level for such opinionated
criticism is low, especially since they spend every bit of their
energy raising their difficult child. So avoid insensitive comments at
all costs. And if you unwittingly blurt out something the wrong way,
be sure to apologize.

*So then what can I do for them?*

Look for ways to be supportive. Let them know that there is another
heart tugging at the load - and it’s yours. Keep on the lookout for
articles about Asperger Syndrome and send them copies. This shows that
you are interested. Ask lots of questions about the special programs
the child is in. Be enthusiastic and optimistic. Let them know you
think they’re doing a great job. At other times, be a sympathetic
sounding board when they have difficult decisions to make, or when
they just need to tell someone what an awful day they’ve had.

If you live close by, consider how much you can help by giving the
parents an evening out. If you’re not certain how to handle the child
on your own, then spend some time shadowing the parents to learn how
to do it - or offer to babysit after the child is in bed. Whatever you
can do to help will be appreciated.

*What does my grandchild need from me?*

He needs to know that you are a safe haven in a bewildering world. It
may seem a lot to ask to be flexible with a child who appears to be
misbehaving, but inflexibility will only put distance between you and
the child. If the child’s manners and mannerisms drive you crazy, ask
the parents for suggestions on how to set expectations for your house.

Learn to listen to the child when he says he doesn’t want to do
something. Maybe some children are happy to spend a couple of hours at
a flea market, but think very carefully before dragging an Asperger
child there. Accommodate to his needs, or you run the risk of ruining
your time together.

When in doubt, ask the parents for advice.

But in general, just make the decision now that you will spend your
time enjoying the child for what he is - a unique and unusual person.
That annoying stubborn streak you see in him is going to be his
greatest survival skill. And even though he seems to be afraid of just
about anything, recognize that he is like a blind person - it takes
tremendous courage for him just to walk through each day. Celebrate
his courage and tenacity.

*To tell the truth, I don’t feel comfortable around my grandchild. I
have no idea what to do when she acts in her odd ways.*

No one said it would be easy. But most Asperger kids are easiest to
handle in one-on-one situations, so look for opportunities to go for
walks or spend time in the workshed puttering around together. Tell
your grandchild your stories, especially those that touch on aspects
of her life affected by Asperger Syndrome. She will love hearing about
the time when you were a girl that you blurted out the secret, or how
difficult it was for you to learn to tie your shoes. You might tell
her about times you wished you knew how to say something, or times
when you wanted to be alone. Stories like these can create a powerful
bond between you and your grandchild.

You may discover that all she wants to talk about is her pet subject.
Don’t despair. If it’s something you know nothing about, then this is
an opportunity to learn something. Search for some magazine articles
on the topic so that you always have something new to share together.
In time, you may find that you have ideas for helping her expand her
interests into other subjects. But even if you do nothing more than
listen and share her enthusiasm for her favorite topic in the whole
world, your grandchild will learn that Grandma cares.

When you spend time with her with other people or in public places, it
might be helpful to think of yourself as a seeing-eye dog. Remember,
she is “blind” in certain ways. Point out trouble-spots and guide her
around them, explain social situations that she can’t “see,” and
narrate what you are doing as you do it. By doing so, you’ll help her
to feel more secure with you, and you’ll be actively participating in
her special programming.

One word of caution: watch the emotional levels. Asperger children
often have great difficulty sorting out emotions. If you get angry,
the child could lose control because she is unable to deal with your
anger and her own confusion at the same time. Reign in your temper
when the child is clumsy, stubborn, or frustrated. In situations where
you feel you really need to be firm, keep your tone calm, your
movements slow and even, and tell the child what you’re going to do
before you do it. Get advice from the parents how to deal with little
meltdowns so that you are prepared in advance, but do your best to
avoid triggering them.

Here are some simple *DO’s *and *DON’T’s* to remember when spending
time with your grandchild:

    * Do praise the child for his strengths.
    * Do get involved in the child’s interests.
    * Do learn what sorts of activities are recommended for the child.
    * Do acknowledge the child’s expressions of frustration.
    * Do respect the child’s fears, even if they seem senseless.
    * Do control your anger.
    * Don’t tell the child she will outgrow her difficulties.
    * Don’t joke, tease, shame, threaten, or demean the child.
    * Don’t talk to him as if he were stupid.
    * Don’t compare him with his siblings.
    * Don’t feel helpless - ask for help. 



Simone said...

Now you've gone and made me cry!
House is looking beautiful too btw, and your photos are amazing! Will be checking back more often :)


julie said...

You know, I've always felt that parents of special needs children were handpicked by God. You are amazing. No one is better equipped to teach and raise your child than you are. Your boys are lucky to have such a loving and determined mother.

Justine said...

I loved your story and can so relate to it at so many levels. Our 5 y.o. was recently diagnosed with AS and my whole life turned upside down. This included relocating to the other side of the world at the same time. Be strong and be grateful... they are such special children, who will no doubt grow into exceptional adults!

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