HELP FOR PARENTS OF CHILDREN WITH ASPERGER'S & HIGH-FUNCTIONING AUTISM

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Help for Grandparents of Aspergers Grandchildren

Q & A with a grandmother of an Aspergers granddaughter:

If your granddaughter has been newly diagnosed, then welcome to the world of Aspergers (high functioning autism). 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 grandmothers, 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 mom & dad seem to be clinging to this diagnosis as if it were a life-raft in the high seas? And why are counselors, psychologists, occupational therapists and special education teachers suddenly getting involved?

As a grandmother, 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. Kids with Aspergers 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 grandmothers 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 Aspergers. But I still don’t understand what it is.

Aspergers 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 kid. 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 mom & dad complaining about the difficulties they’ve had with the kid in the home - obsessive behavior, irrational outbursts, wild fears, and irritability over the smallest issues. These problems are not misbehaviors, but rather the kid’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, Aspergers enables the kid’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 Aspergers, and is the reason why a great number people with Aspergers 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 Aspergers out there.

You may remember an “odd” kid 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 kids have been living and growing up alongside other kids 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 Aspergers, we now can give a new generation of Asperger kids a chance at the same kind of life that other kids 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 Aspergers, though most scientists acknowledge a genetic factor. So the deficits your grand daughter has can only be understood, minimized and worked around. They will require accommodating on everyone’s part. But in time, with proper programming, the kid’s behavior and understanding of the world should improve.

Specialized therapies for autism disorders are available, but in most cases, the mom & dad must bear the full cost. This can cause tremendous financial strain on the family. In addition, while most regions require specialized programming for Asperger kids, these programs are rarely sufficient for the kid’s needs. So the mom & dad 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 Aspergers. 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.

She is normal. And she 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 Aspergers are not always readily apparent, especially in milder cases. The kid is usually of average intelligence or higher, yet lacks what are essentially instincts for other kids. If your grand daughter 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 granddaughter for what she 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 Aspergers is a cause for concern. It’s not at all the same thing as the sort of developmental delay that some kids 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.

Un-kidlike behavior doesn’t mean that a kid 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 kids learn - about things, about life, and about each other. Precociousness is cute and is sometimes a source of pride for grandmothers, but it is also often an indication that there is an underlying problem that needs to be addressed - and the earlier the better.

If Aspergers 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 grandmother generation.

But before you get defensive, remember that Aspergers 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 Aspergers, 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 kid’s mom & dad believe it. They live and work with the kid daily and are in a unique position to notice the deficits. Because they care deeply about that kid’s future, they aren’t concerned about the stigma of a label, as long as it means the kid is eligible for the specialized programming she needs. They have put their pride aside for the sake of the kid 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 mom & dad are already living with a great deal more stress than other parents, and they don’t need the added strain of skeptical or judgmental grandmothers. Otherwise you may suddenly be faced with the pain of being unwelcome in your granddaughter’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 kid, thwart anything that might trigger a meltdown, predict the kid’s reactions in all situations and respond immediately, look for opportunities to teach the kid 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 kids 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 kid. 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 kids 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 kid 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 kids:

‘All you ever do is complain about how hard your life is.’

‘Don’t believe everything those psychologists tell you. He’ll just grow out of it, wait and see!’

‘Everybody’s got to have a problem with a fancy name these days!’

‘He wouldn’t act this way if you didn’t work.’

‘He’s having all these problems because you took him out of school for that home-schooling nonsense.’

‘I managed all by myself with four kids. You’ve just got two, and you can’t handle them!’

‘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!’

‘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?’

Keep in mind that parents of Asperger kids 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 kid. 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 Aspergers and send them copies. This shows that you are interested. Ask lots of questions about the special programs the kid 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 mom & dad an evening out. If you’re not certain how to handle the kid on your own, then spend some time shadowing the mom & dad to learn how to do it - or offer to babysit after the kid is in bed. Whatever you can do to help will be appreciated.

What does my granddaughter need from me?

She 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 kid who appears to be misbehaving, but inflexibility will only put distance between you and the kid. If the kid’s manners and mannerisms drive you crazy, ask the mom & dad for suggestions on how to set expectations for your house.

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

When in doubt, ask the mom & dad for advice.

But in general, just make the decision now that you will spend your time enjoying the kid 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, sometimes I don’t feel comfortable around my granddaughter. 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 granddaughter your stories, especially those that touch on aspects of his life affected by Aspergers. 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 grand daughter.

You may discover that all she wants to talk about is his 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 grand daughter 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 kids often have great difficulty sorting out emotions. If you get angry, the kid 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 kid 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 kid what you’re going to do before you do it. Get advice from the mom & dad 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 granddaughter:
  • Do acknowledge the kid’s expressions of frustration.
  • Do control your anger.
  • Do get involved in the kid’s interests.
  • Do learn what sorts of activities are recommended for the kid.
  • Do praise the kid for his strengths.
  • Do respect the kid’s fears, even if they seem senseless.
  • Don’t compare him with his siblings.
  • Don’t feel helpless - ask for help.
  • Don’t joke, tease, shame, threaten, or demean the kid.
  • Don’t talk to him as if he were stupid.
  • Don’t tell the kid she will outgrow her difficulties.

The Aspergers Comprehensive Handbook


COMMENTS:


Anonymous said...
I plan to print it out and mail it. THANK YOU, THANK YOU! This is perhaps the most important article I have read on your site. You put into words, exactly why I am going thru with my family, and so desperately what I need for them to understand. This is all too much to go thru alone. And not only is my relationship with some family members broken, but they are missing out on getting to know a really great kid.

Anonymous said...
It is like you step into our life and know exactly what it is like. Do you have any idea how helpful you are? Thank you for yet another amazing article!

Anonymous said...
i feel like this article was written with my concerns, i have been the helicopter mom, helping her daughter for almost 3 years now with all of her therapies and I feel like no one ever gets what I am trying to say, so thanks for such a great article.

Anonymous said...
Thank you so much for the wonderful articles you share. So often the outside world just doesn't "get it". Thank you for making it easier to help them understand.

Anonymous said...
This is very interesting & I put in a comment before but don't see it with the other comments. I know that my son & grandson both have this & all of this helps me understand them better! Lord bless you!

Anonymous said...
If you ever need a volunteer or someone to help at one of your lectures/seminars I would love to do that. I want to get more involved with Aspergers/Autism. I just don't know how or what to do. I have worked 35 years in the healthcare field and now at 53 I am retired. YEA!!!! Aspergers is my passion now. Thank you so much for all your help and great you-tube videos and newsletters. I think I am about done with your you-tube videos. I think I will be an expert when I'm done with all your info. Thanks again for all you do for the kids, parents and GRANDPARENTS (me) struggling to make sense of all this. You are amazing. Someday if it would ever be possible I would pay you an office visit to just meet Kinser. I know you are very busy but for some reason I would just love for you to meet him. I think there is just something unique and special about him. I know you said you are not at this time taking new patients so I'm not asking for that at all. Although if you ever do accept new patients please let me know. Thanks again for everything.


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