Letter to Grandparents

Especially for Grandparents of Children With Asperger Syndrome
By Nancy Mucklow

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 age.

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 genius.

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 action.

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 house!’
‘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 psychologist?’
‘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.

©Nancy Mucklow
The author, Nancy Mucklow, is a journalist and parent of a child who is diagnosed with Asperger Syndrome. She wrote this article in the hopes that it would be shared with grandparents of children diagnosed with AS.