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Monday, August 22, 2011

Being the Help We Seek: for Caregivers and Autistic People

"Perhaps they never will" Don McLean
  Those words resonate through my being ever time I talk to a parent of an Autistic child. They are trying as hard as possible to get people to listen, and in their trying...sometimes they can't hear the children with Autism. For the children who may not be as eloquent as others and for those who can't speak, it is left to us as ASD adults to share what we hear and feel, how we experience the care of those around us. In this way we can build bridges of understanding, and hopefully unite those with Autism and those who loves us. Then, perhaps progress can begin.
    Following is how I've experienced the pain of caregivers in different areas of my life, be they parents, spouses, friends, coworkers...etc.
  To the Caregivers: Though your love knows no bounds, and though you sacrifice, please know that even an ASD child may be totally mute, they hear every word you say. They see every time you hurt yourself by not getting the help you need in favor of desperately trying to help them.
  Somewhere along the line it's gotten backwards. Families are becoming depressed, sometimes neurotic and if you've seen the news lately, some have been suicidal and a few have committed homicide. Please, do not think you're exempt. I do not believe than any one can be a 24hr a day caregiver and not experience at least times of being emotionally unstable. Even therapists who work 8 hr days are required to get therapy. Though you love so deeply, please know that there is no more effective way to harm a child than to harm his mother or father or other caregiver. To love us, you must, must, must take care of you first.
  All too often the focus gets put so much on our Autism that sometimes very ill caregivers have gone past the emergency stage in needing help for themselves. You cannot give what you haven't got. You cannot help us without helping yourselves first.
   I realize there is little time. I realize this sounds like the utmost in selfishness, but if you don't take care of you, I will be reading your story in the obituaries. It may be suicide or any number of physical illnesses born of your stress, worry and sacrifice that will take you, and that would be sad for me and the many you may not realize that love and need you to take care of you.
   I know how many have turned to Autism organizations, and I know they are asking for extra dollars, when you haven't seen the site of an extra dollar in years. I know you've given your time to them, and I know they've used you to raise extra money for themselves and for research that is doing nothing to help you in this emergency moment.
    If you so much as think in terms of ending your life or someone else's, please contact a mental health professional! If you have a plan to end your life or someone else's, get someone to bring you directly to the hospital. If you are convinced you want to do it, and it is the only choice, why not wait a day and give the people a chance to come up with a better solution? Admit it may be possible that you might not know everything, you may not have seen all of the options. Let someone else try.

  To us Autistics: Society has so far not done a lot to help us. I'm with you there. Monstrous amounts of money are being raised in the name of Autism, and you're not seeing any of it effect your life. Families are trying and either getting more on your nerves daily or breaking your heart as you watch them hurting themselves. We aren't doing it to them, and we can't save them, but we can help!
   Let me recap. Society isn't helping, families can't do any more than they are doing. Looks pretty bleak, doesn't it? No.
  What we, all of society including those who love an Autistic person, and Autistic people themselves have been doing is NOT working.  I am going to flip everything and shine the light in another direction. Ready?
  You, the person with Autism may be the light at the end of the tunnel. Help is desperately needed. As an autistic person, I have things to offer. I can't do everything, but I can do some things, and some very well.  I may be the one that calls the authorities on my own family if they get nuts and start talking suicide. I may have to be the one to say, "Mom/Dad, Sister, Brother, if you don't get help, you cannot help me." I may be the one to have to walk away to save myself if they refuse to get help too.
   It may well be the Autistic people who are going to save the lives of our families and loved ones and even ourselves. Help is needed and someone has got to step up. Yes, us. Others can try to make us scapegoats for their problems, but we can refuse to take that responsibility, and see that we are not responsible for every emotion other human beings have. We can call them on the fallacy every time someone says, "You MAKE me feel.." We're not gods who'd have that kind of control. We can't make anyone do anything. We can let others have their own feelings. We can never act perfectly enough to force another person to be content. We're just not that powerful.
   This is just bare beginnings of thought, but we are going to need tools and resources to help our NT families. I suggest emergency numbers. They've got them for us, and we need them for them. This is life and death. If we know an NT person has someone that they confide in, we need that number too. We need all contact information of anyone and anything that supports them, and we need to be able to make those calls. This could be family, churches, any group or individual they (not we) find comfort in. Write a short list of information to give including the care giver's name, the address and phone number where you can be reached. Have a script! Even something like, "Jane is in trouble and needs you!" will help.
   NT's often need some kind of therapy, and they often don't get it. As we've progressed, we've watched them deteriorate. It's not our us or our Autism, but they don't know that yet. Here are a few things that may help. I went searching the net for programs specifically for them to help them get to the root of their problem and get through it to some measure of hope and happiness. (WE need them to be happy and whole!) Therapy is great and it costs money. They will have to be desperate, I mean totally desperate to even consider what I'm going to write, but if they are fortunate enough to be at the bottom there may be some hope. If they're not done fighting, I am sorry. We will have to hope they'll learn to let go soon. (They will see "fighting as a good thing" as in fighting for your care, but I am talking about a destructive fighting drive to "help" right up to and through suicide. Of course, that is never "help."
  I'm a long term member of a 12 step group, and there are many different kinds out there. I saw yesterday that these steps have been rewritten for caregivers. It may help, if they are willing.
   Neither I nor anyone else is going to make money off of this. It is a matter of my very life to pass on what has been so freely given to me.
  Again, hope begins after they let go. Other, longer standing 12 step programs are Emotions Anonymous and Alanon Family Groups. The three I've mentioned would be the most helpful.
     Certainly, if a caregiver drinks or takes too many pills to cope, there is Alcoholics Anonymous and Narcotics Anonymous. All of these help people find a way to be content regardless of their circumstances. All use the same 12 steps, and every last one is free.
  None of these care what religion (if any) people are, how much money they have, what color they are, or if they are male or female. First names only are used, and no one even needs to know that they talked to anyone there or even went to their meetings. It's "anonymous." Frankly, I think these steps should be taught as problem solving strategies in early school, and that anyone could benefit, but they just won't work for a person, until that person has collapsed of all ideas of their own on how they are going to fix, control and manage people, places and things.

    I have to tell you, you can't force them to get help. You may have to watch them go through more pain. There is no greater force on the planet against health and sanity than the determined martyr. Let these resources be there should they reach out for help. You've seen them.
      These are just options. I don't care where people get help be they Autistic or Neurotypical.     It does not matter where a person gets help. If it works, it works! If you know of people or groups that have been supportive, share them with those you care about. Share them with other families who need help, and if you get any help, just keep paying it forward. Your very life may depend on it. Mine does, and it's working out beautifully. My aim is to build bridges of understanding, and help us see through each other's eyes. We all love, we just don't always know how.
  You're saying, "But I can't help my family! I'm the one with Autism who needs help!" I hear you..
   I heard a story a very long time ago, and I don't know the author, but it helped me.
   There were a bunch of people at a very long table. A feast as they'd never seen was laid out and they were starving. You see, they had no elbows. They picked up the food, and try as they might they could not get it to their mouths to feed themselves.
   The same table was laid out in another room, and all of the people there had no elbows either. In this room, however everyone was eating, and they were happy. Each person picked up the food and instead of trying to feed themselves, they fed another.
   Everyone needs help sometimes, and sometimes we get to be the one who gives it.
tina jones


  1. >>>There is no greater force on the planet against health and sanity than the determined martyr.<<<

    Genius. I know, because I've been one. PITA.

    Like your slant in the discussion regarding SBC "zero degrees of empathy" SBC on Kim Wombles autism directory. ( ) Lordie, deliver us from those who would help...

  2. Usethebrainsgodgiveyou,
    I am really impressed by the input you and others have written in this autism directory. People like you give me so much hope. Thankyou!

  3. This is interesting to read. Thanks for posting your URL on The Thinking Person's Guide to Autism.

  4. Thankyou, for reading, Dixie. I hope it's helpful to someone.