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Don't Become an Autism Martyr

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Updated September 13, 2013

From the moment a child is diagnosed with autism, most parents feel that they’ve been dropped into a virtual tornado. There’s nothing to hang onto, and, at some points, no way to tell up from down or good from bad. Somewhere out there the ordinary world still exists, but some parents feel that their old, normal lives are gone forever. Some parents even feel a sense of guilt -- as if their child's autism is somehow their fault.

And they become absolutely, 100% dedicated to autism.

To the point where they give up their personal lives, professional lives, family lives, financial security, and even their health. Because they believe with all their hearts that “that’s what you do when you have a child with autism.”

Of course, you need not – and SHOULD not – give up your life in order to be absolutely available to and involved with your child with autism.

When I say this, I’m not just saying “don’t stress yourself out,” or “you deserve a full life.” Because martyring yourself to autism isn’t all about you. It’s about the people around you, including your child with autism. What do I mean by this? Well, here are just a few likely outcomes when you decide to become an autism martyr:

  • By focusing all your attention on “fixing” your child with autism, you may undermine your relationship with your child who, despite her autism, is every bit as lovable and wonderful as he was before the diagnosis. Yes, you take her from therapy to therapy -- but there's no time left over to play or cuddle together. When that happens, you lose the very closeness that led to you become an autism martyr in the first place. You also lose the sense of joy most parents can feel when they just hang out with their child in a favorite place – a pool, a forest, a playground – and enjoy one another’s company. This is bad for you – but even worse for your child.

  • By giving up a career, personal relationships, financial security and other necessities of life to care for your autistic child, you may develop a sense of resentment toward your child. What if he DOESN’T respond to all your loving care with tremendous success – even after you’ve given up everything? How will you feel? Chances are, you’ll feel a great sense of frustration bordering on despair. There’s nothing else you can do; you’ve done it all; and the problem isn’t solved. When you become overwhelmed and depressed, you’re certainly hurting yourself; but of course you’re also making life much more difficult for your child with autism and others in your immediate circle.

  • By becoming a full-time, no-holds-barred autism parent, you identify yourself completely with your child. If your child DOES do well, you’ll tend to take credit for yourself, rather than giving credit where it’s due: to your child, who has worked hard and overcome some or many of her challenges. All too many autism memoirs are not about a child with autism: they’re about the martyrdom and extraordinary challenges experienced by a mother (or father) who has given absolutely everything to their child – at the expense of husband, siblings, parents, friends, personal interests, career, and even health. While you may look like a hero to some people, chances are those people won’t include your spouse, your other children, or anyone else who needed you when you insisted that your only focus should be autism.

  • When you dedicate yourself absolutely to one family member, you give short shrift to the others. If you have a spouse, other children, parents, or others who also need your love and care, how will they fare without you? How will they feel about you – or about your autistic child? There’s a good sense that your well-intended dedication will lead to frustration, alienation, and even – in some extreme cases – to divorce or to isolation from your other children. Obviously, that’s good for no one.

  • If, without planning for it, you have given up a career in order to care for your child with autism, you are losing money you need. While you may have some money in savings, chances are you’ll burn through your safety net quickly. What will you do when you’re down to pennies and your child with autism is still… a child with autism? Will you go back to work and try to do it all? Will you take out a second or third mortgage? None of these options are likely to be feasible for the long term. In fact, the outcome could be seriously financial issues which will undermine your ability to provide any kind of private therapies or programs for your child with autism.

  • When you spend all your time thinking about autism, you lose perspective. Every minute of every day is spent reading or thinking about autism. You probably will spend untold hours with other autism parents in waiting rooms or therapy groups, discussing autism. And that makes you more vulnerable to scams, overbearing “therapy pushers,” or others who insist that their new therapy, therapist, group, or school is “the one” that will make all the difference for your child. Many parents have spent thousands on therapies that have actually put their child at risk of harm, simply because other parents pushed too hard -- and they listened.
Reading and thinking about autism is confusing, and there’s no way to get away from that. But when you have other people and concerns in your life, you can choose a path and follow it. When you are immersed in autism culture, it is very difficult indeed to avoid swerving back and forth between and among therapies, looking for the perfect person or technique for your child. This approach makes it very tough to evaluate what really does work (or what doesn’t work) for your child. It makes it even harder to distinguish the impact of a therapist or therapy from the impact of ordinary maturation. Some children just get better as they get older; if that describes your child, you’ll never know it.

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