A Fantasy for Parents of Newly Diagnosed Autistic Children

I wrote about some of these ideas before in the Fantasy For Autists post a couple of weeks ago.  This is a follow up post, a fantasy for parents of newly diagnosed autistic children.

When Emma was first diagnosed I felt fear more than any other emotion.  It was overwhelming and crushing.  The word “autism” carried with it a weighty sense of doom.  People have described it as akin to receiving a “life sentence,” it was a word I knew almost nothing about, and what I did know wasn’t good. “We don’t know what causes it,” “There is no cure” were the words we were told many, many times by the various specialists we went to, seeking help for our beautiful, happy, fiercely independent daughter.  Those words were said matter-of-factly, but the grim set of the lips by those who spoke those words belied the truth, it seemed.  Some specialists would follow those words with a sad shake of their head, often done while uttering, “I’m sorry”  as they ushered us out of their office.  The doctor’s appointment now over, we were left standing alone, confused, terrified and overwhelmed by what we could not understand, by what could not be explained, by what seemed like a dark cloud enveloping every aspect of our lives.

Then there were the depictions in the media of the devastated families struggling to make ends meet, the scary images of the perseverative, stimming children in full meltdown, family members run ragged, siblings, silent and resentful, spouses angry and argumentative, and the autistic child, always somewhere in the background, seemingly oblivious to all the chaos they supposedly had created within, what would otherwise have been, the perfect American family, had they not been born.  While this may help with fund raising by preying on people’s fears and pity for those less fortunate than themselves, it is these depictions that the newly diagnosed child and her family will see.

Can we take a moment and consider how these depictions make the newly diagnosed child feel?  What message is being sent?  This child that everyone is so sure isn’t picking up on any of this, but perhaps is.  What if that child understands a great deal, even at the young age of a year and a half ?  What if that child is extremely intelligent and feels the overwhelming sadness their very existence seems to be causing their family?  What if these feelings are then intensified by the things that are said between family members in front of the child or within hearing distance of the child?  How would this affect the CHILD?  Think if you grew up feeling you were a mistake, damaged and broken?  What if the words that were used about you and to you were said with anger, exasperation and annoyance?  What if instead of being given the help you so desperately needed, you were told that the things that helped you concentrate and focus were wrong?  What if you were told almost everything you did was wrong?  Would that help you do things differently?

These negative images are also what will flash through the minds of the parents as they are given the “dreaded” diagnosis.  Listen to any newscast about autism.  The way the news anchors say the word – “autism” – the voice lowers, there is often a hesitation before the word is spoken.  Look at the statistics, the alarming statistics that cause everyone to feel frightened, because we know so little, so we fall into fear, fear of the unknown, fear of what might be, fear of the future, fear of the present, fear.  Is all of that fear helping any of us?  Does fear help us as parents do a better job parenting our autistic children?  Does the fear give you patience, does it help you when your child is unable to express themselves and so acts out?  Does that fear make any of us behave better, more appropriately?  Does the rampant fear help us sleep at night?  How’s all that fear working out for you?  Does it help?  And if you think it does, I’d love to know, how?

But what if this was not the way families were introduced to autism?  What if instead of sitting with the sympathetic, yet professionally aloof specialist the family was introduced to a group of self appointed adults, all of whom were autistic. What if these adults were verbal and nonverbal, women and men, spanning a wide range of ages?  What if each Autist “spoke,” whether through language or by typing or through a voice activated device?  What if the families were able to ask questions and were allowed to approach these Autists and even were able to have one or two or more assigned to them, the way a social worker is now, during Early Intervention?  What if those Autists were available to the family and their autistic child?  What if these were the people the family could turn to when they had questions, needed help finding resources, schools, methodologies or just wanted to check in with someone who might understand their child better than any pediatrician, psychologist, developmental pediatrician or neurologist could?

What if each Autist was given an opportunity to discuss what it was like for them growing up, the things that helped, the things that didn’t?  What if those Autists discussed how to teach life skills?  What if each family went away from this initial “welcoming” meeting with a folder that included a handbook written by Autists, a list of resources of Autistic doctors, neurologists, pediatricians, Autistic run schools with curriculum approved by Autists and others designed by Autists, and a list of  some of the essential things parents need to know and remember as they help their autistic child live and thrive?   What if, instead of being bombarded with frightening stories of self injurious nonverbal children we were shown videos of nonverbal Autists helping those children learn how to cope?  What if we were shown videos and news programs about all the Autistic adults who are pursuing their passions?   What if there were Autistic lawyers, neurologists, accountants, pediatricians, veterinarians, Occupational Therapists, Speech Therapists, Teachers, Educators, Head Masters, scientists, musicians, singers, performers, painters, writers, that we were all exposed to and knew about?  How would this change how we viewed our own children?  What if we were given the support we needed to help our children reach their potential without sadness, fear and pity?  What if?

My wish for Mother’s Day is that one day this will no longer be a far-fetched fantasy, but will be a reality.

To read my latest piece, Emma’s New Shoes, in the Huffington Post, click ‘here

And if you haven’t already done so, do vote for Emma’s Hope Book by clicking this ‘link‘ and clicking on the “like” button opposite Emma’s Hope Book.

11 responses to “A Fantasy for Parents of Newly Diagnosed Autistic Children

  1. This is so good, such a wonderful idea! And why not? It would have a three-fold benefit: it would give meaningful information, comfort and advice to the families; it would be much more helpful to the children who otherwise are being diagnosed/treated by persons who know nothing about autism; and last, but not least, it would give autists themselves a “voice”, a mission, a special purpose in life, which only they could provide. No one else can study to be an autist, they are in fact unique with abilities that we haven’t even fathomed.

    I hope that many others will read this post, mothers, fathers, grandparents, everyone, and for Mothers’ Day I wish that every mother can have the blessing of a wonderful daughter, like you, and yes, a granddaughter like Emma…a child who can open all of our eyes to the possibilities that love can bring about.

    Thank you, Ariane, for being YOU, for being the daughter that you are, and for making such a difference in the world, not just to Emma, but to me, and all of us who know and love autists.

    I love you,

    Mom/Granma

    • To my MOM: It was you who taught me to try to understand that which I didn’t, it was you who taught me to ask questions, it was you who taught me to research, to look for answers and that it was okay not to know.
      I will never forget when we were in Mexico (I was no older than 10) and I wanted to give some of my money to a man who was begging and you told me how proud of me you were. Or the time you stood up and gave your seat to that indigenous indian woman holding her infant who had been relegated to sitting on the floor of the boat we were in, because she wasn’t suppose to take a seat that a tourist might occupy, or how you supported Pop and was his sole caretaker for the last decade of his life, helping him when he could no longer take care of himself, without complaint, but instead with love and appreciation for all that he was and gave to you. It was you who taught me that what we as a society believe to be true and important and what really is true and important are often not the same thing. It was you who has over the course of your 83 years have lived a life of someone who has remained open to new things, interested in learning, and who through your seeking has gone on to encourage others to question and learn. It is you who showed me how to love my own children unconditionally, without judgment or preconceived notions of who and what I wanted them to be, but to rather embrace who they are and encourage them to follow their interests.
      Happy Mother’s Day, Mom. I love you.

  2. Dear Ariane and Paula,
    What a wonderful gorgeous world you both paint! How about making this kind of understanding/experience widely available to thousands of people — autists, their families and the general public — and relatively quickly? After reading a couple of days ago about Coursera and Harvard’s free online courses, I signed up for two. So . . . what if Harvard or Coursera could be persuaded to let you and others you would choose present this as a course? A course not only for Autists and their families but for everyone? There are all sorts of courses on line explaining how computers work, for “civilians” like me . . . why not the same for autism with the explosion of diagnoses? Wouldn’t there be some sort of easily-documentable savings in public health costs if this kind of education was made available? Imagine if the general public began to really understand, and could interact with their fellow autistic citizens with this kind of understanding and support? Imagine if newly-diagnosed families could just go straight to this, and they wouldn’t have to start by trying to find a support group in their community. Imagine if a newly-diagnosed family living in a remote community without any known autists nearby could link into something like this that would present information in a clear and comprehensive way?

    • Thanks Barli. I wish I knew what the next step would be. But I don’t. I don’t know how to begin making this a reality. But I’ll keep thinking and writing until I do!

      • I’m serious about this online class idea. Imagine what would have helped you, “educated” you at the start . . . If you were to develop a “curriculum” of people, lectures, or videos, who/what would be on it? Imagine, just to start, four one-hour sessions. [I signed up for an online U Penn course about the Affordable Health Care Act and it’s four one-hour classes in June.] What would you put into those four one-hour sessions, that would really help parents?

        All these wonderful ideas, energies, blogs — they need to be harnessed into something that can be made readily available, and I think the online course idea is worth serious consideration. I have no connections to such an opportunity, but would be glad to be on a team to figure it out with you.

  3. This made me cry….but a good kind of tears. So beautifully articulated. I feel I can not do it justice with my comment, with my words. Thank you, and Happy Mother”s day! You are such a beautiful and amazing force in this world,and Emma is truly fortunate to have a mother like you:)

  4. How fortunate we are to be witness to this beautiful exchange of words between you and your lovely mother! I am equally as fortunate to have a great relationship with my mom and mother in law who accept and love unconditionally. Thank you for sharing this and Happy Mother’s Day to you both!!! Blessings!! B~

    • It’s wonderful, isn’t it? We are lucky, you and I to have our mother’s still around and to have good relationships with them! Have a great Mother’s Day!

      • My eyes so full of tears after reading all of the comments, and special thanks to you, Barli, for your suggestions, but will ponder all of this and get back.

        Happy Mother’s Day to all of you out there who read and appreciate Ariane’s blog!

        Paula/Mom/Granma

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