Autism Awareness: Don't forget to take care of the caretakers

April is Autism Awareness month and as we continue to raise awareness of this most common disability with 1 in 68 children having an autism spectrum diagnosis, it is important that we don’t forget to take care of the caretakers.

There are the parents, grandparents, teachers, brothers, sisters, and all other care providers that help these children learn to live with their diagnosis and lead a fulfilling life. And a person with this kind of hear is the typically the kind of person to put themselves last. Unfortunately, this type of care taking can be physically and emotionally draining. Similar to the safety instructions on an airplane, it is imperative for care givers to put on their oxygen masks before helping others.

What might parents, families and care takers experience?

After the initial “shock” wears off, there will be grief. That seems like a scary word but it’s a very natural response to the series of emotions we feel after we have lost or perceived we have lost something. This is very common and can look like anger, depression, loneliness and/or denial. These feelings will ultimately subside and we will accept this are our new reality.

So now we have accepted this is the new realty – what can caretakers do to take care of themselves?

There are many website with great information on things you can do to take care of yourself. I would encourage you to look through some of them. But here are few things you can start on now.

  • Start Getting your Child Treatment. Beginning treatment can help ease your anxiety about how you will handle this. Often care takers will have to figure this out as they go, so the key is to just get going. Moving forward will help move you forward.
  • Ask for help. This can be a difficult step to take initially. When support is offered, do not hesitate to accept it. There may be many people around you who would like to help but may not know how. Identify where you could use help will make it easier for you to accept their help and direct their efforts.
  • Talk to someone. We all need someone to talk to. It can be very helpful to let someone know how you feel and what you are experiencing. Even a phone call to a friend can help.
  • Find a Support Group. Support groups can be extremely helpful during tough times. You may not consider yourself a support group type of person and you may have to try more than one until you find once you like. These can be a huge source of relief and can potentially provide you with resources in your area.
  • Take Breaks or Self Time Outs. Allowing yourself a small reprieve from the demands of care taking can mean the difference between successfully coping or not. Even if the time away if just a few minutes for a short walk, take them. One common reason care takers neglect themselves is the guilt they might experience when they do. It is imperative to remember that this a marathon, not a sprint. The better you feel, the better you will be for the child. Regular, quality sleep or rest is imperative for good decision making, patience and overall health.
  • Journal. There is much research that suggests keeping a journal during traumatic events or writing our deepest thoughts and emotions helps improve our health and immune system functioning. Additionally, a journal can be a way to track a child’s progress.

For more information please visit:  

Autism Speaks –

National Autism Association -


Crista Murray also recommends reading the poem below. (Great poem)


by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

c1987 by Emily Perl Kingsley. All rights reserved

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