Winner: Cutting Edge Therapies for Autism by Ken Siri and Tony Lyons
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A Mother's Perspective: What is Autism?

Black belt autism By J. Lorraine Martin

Over the fifteen years I’ve raised my autistic son, I’ve struggled to articulate to others the pain of the journey.  I’ve read reflections equating autism to an unplanned trip to Holland.  When one has laid on a cold, tiled floor in a darkened room with an autistic child beating his head with his fists in sheer catastrophic angst, screaming “I’m afraid!” and “Make this stop!” and one craves rescue both for them self and their child, Holland is simply a fairytale. Another essay that came my way suggests the universe is paying me a compliment as I was selected for this role because I was so patient and wise; I’m encouraged to gaze at my saintly self in the mirror.

These reflections ring untrue in my mind.  Here is how I have experienced autism…

Autism is an empty suitcase. Upon receiving the diagnosis, you will hear and see volumes of theories and remedies, with no definitive answer in sight; it is to be overwhelmed with the emptiness of the suitcase placed in your hand and the myriad choices of what to pack.   
Autism is an empty guidebook. You will hold the book in your hands looking for answers, but you will painfully come to understand your job is to fill the blank pages with your own words, your own map, your own best guess at solving its riddles; your child is like no other despite the commonality of a label.

Autism isn’t locatable.  It is a mysterious an endless array of degrees of longitude and latitude, not confined to one defining point on a map.  You often have the sense “Where am I?  Where am I going?”

Autism is war.  A recent study confirmed that autism moms have stress levels consistent with soldiers in combat as we often live our lives bracing for the next assault.  Will my son scream at a family restaurant outing because the blender came on?  Will he attack our family dog when he barks?  When his sobs and remorse replace his anger, can my heart handle yet another deep break?  In a marriage and in a family, tough feelings are tossed around and deflected, like juggling a grenade. It is to find yourself lying on the floor sobbing so gutturally that your chest will ache for days because your son is hiding in a make-shift fort at school due to overwhelming fears.  It is to see your other son hide in his room and lock the door when he hears his brother raging.  It is to listen to your daughter tell you how she watched her brother screaming at a fire drill at school while others mocked him.  It is to see your strong husband appear forlorn and listless, as you both helplessly watch your son shrieking and being self-injurious in a windowless basement room because he is not even comfortable in his own skin.

Autism is a thief.  It is to send your family away for a vacation because your autistic child can’t manage the trip’s demands.  As your other children are putting their feet into the Pacific Ocean, you will be sitting in a McDonald’s play land on an Easter morning, sinking in despair.    Autism took the boy who could have been, loaded up holiday traditions in its bag, and often separates you from the rest of your family.   
Autism is isolation and loneliness.  People with sick children receive cards, phone calls and casseroles.  Autism parents most often receive silence and recoiling as the topic is uncomfortable.

Autism is guilt.  You will feel it’s your greatest moral failing that you didn’t find the cure, saddling you not only with the death of a dream but the guilt that you could have rebuilt the dream if only you had tried harder. 

Autism is endless. Autism denies a parent an end to the grieving process.  While you hope for new studies and insights, savor small gains, and try new medicines and interventions to smooth the edges out, mourning and yearning are always flowing under the surface. 

Ironically the following quotes inspired by cancer battles resonate:   
"Cancer changes your life, often for the better. You learn what's important, you learn to prioritize, and you learn not to waste your time. You tell people you love them. My friend Gilda Radner used to say, 'If it wasn't for the downside, having cancer would be the best thing and everyone would want it.' That's true. If it wasn't for the downside."  - Joel Siegel
“When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or Fight Like Hell." - Lance Armstrong

So what can a person “outside” of autism do?  Listen.  Encourage. Understand.  Don’t Judge. Ask Questions. Give your time, your heart, your voice and your money to causes that seek to find answers to this devastating, lifelong condition.  The sorrow I share is just a drop in the painful ocean of this journey as many a parent will never hear words at all from their children, never have eyes meet theirs, and may lack the money or access to quality care.  Society must rise to the challenge to answer this crisis.   Will you?  
Like Lance, I wake up and consider my choices, and each day I continue to fight like hell, but make no mistake, it is a fight, a long battle, a never ending war against an unknown and unrelenting enemy that resides within my boy.  I’m not traveling to an enchanted land; I’m simply trying to survive and keep a family afloat. 

My boy gets up each day and also fights.  He fights his fears and phobias that often throw trenches and land mines in his pathway, but he fights for happiness and meaning as we all do.   If anyone can look in the mirror and see a saint, it would be him, my boy and every child who lives a life with autism.

J. Lorraine Martin is a graduate of the University of Florida and a mother to three children, one of whom has autism.  She maintains a personal blog featuring irreverent musings and deeper reflections on a variety of life topics including autism at



My earlier post touches on my emotional journey.I also have to say that my son's journey can at times be quite different.I Have learned to take every day as it comes .MY little boy may have all these difficulties to overcome but he has such enthusiasm for life he gives me great strength .He does really enjoy life but it is not always clear why he does things .I love my little boy so much autism or not and would lay down my life for a small hope of improving his as i'm sure all loving mothers would .I am dedicated to early intervention and have taken all advice fully onboard with the help from my community .That has helped but Tyler is still autistic a very loving child with a sense of right and wrong. He may not understand society's social taboos fully he often displays he understands when others are upset and often does not need prompting to say sorry amazing seeing that he has no language skills. Tyler is a great child and i have been told several times he is a credit to me buy members of his school and our community.Still our daily struggle is significant but well worth the rewards a child like Tyler can give love it makes it worth the fight.

Lara Sparrow

My tears roll every day and though the night .Autism has turned me into an emotional mess. My name is Lara my son was diagnosed with autism at the age of two and now at 7 my life is to keep him happy as i can .He often self harms and i know its because he wants to control every aspect of my life i love him totally but my health has seriously suffer as a result.The feeling of my total isolation is breaking my heart and i want to be jolly for my other son as well but i am in a dark place and feel i must have done something to deserve this i would not wish the pain on my worst enemy.I am 37 years old and i have no life or future i don't have family i am on my own and very scared about our future .SOCIETY PUT CERTAIN PRESSURES ON ME AS A FULL TIME CARER FOR TYLER .This doesn't help matters If you could die from a broken heart i would have already .Thank.s for the feeling someone somewhere understands.There's nothing like seeing your own child hurt himself and not be able to do anything about it .That's what i call torture....

Nancie Attwater

Thank you, I am a grandmother of a child with autism, we need to get as much information as possible out there about this. April is Autism month. I plan to proudly wear my Autism ribbon. Thank you

J. Lorraine Martin

I would like to thank everyone who took the time to read my essay and post comments. Your feedback helps make the journey not feel so lonely. I would like to clarify that in writing such an essay, I wanted to adequately speak to the pain and devastating toll autism can take on an entire family because the journey is poorly understood by most outside this world. I wanted to connect with other parents so that we could buoy each other, knowing that we are not alone in having sad thoughts and paralyzing fear at times for our children. In no way does the honesty of my essay mean that every moment is tragic or that in some way I do not love and accept my child or do not have moments of intense joy and pleasure in mothering him. If anything, such honesty provides freedom and empowerment. It is my hope to use my voice to honor the parental struggle, the sibling struggle, and the autistic child's struggle. My son wakes everyday full of joy and excitement for his day. He is an inspiration like no other to me and many others that have known him and work with him. I simply found it imperative to speak with raw emotion in my essay because despite the intense love and acceptance we have for our children, the journey is arduous, and it often tears apart families who lack proper support. My son has many skills that are very high on the spectrum, and I am surrounded by the most loving and supportive of professionals, and yet I have still felt such devastating pain. I can only imagine the journey of others whose children suffer even more than my child and who lack access to quality care. To each and everyone of you, I thank you for sharing your thoughts as I am reminded I am not alone, and I will continue to fight for my son's well being! I will continue to hope!


beautiful essay. thank you.


The bumper sticker is perfect Lorraine. Thank you for the story. I think every parent can relate.

Anna Lee

There are families that deal with daily violence from their autistic children. Parents of these children are taught many martial arts skills and moves to defend themselves from these attacks. It is an extremely anguishing part of life for what is estimated to be 10% of the autism population. Do not discount the pain of these families by thinking you are clever displaying this bumpersticker. Show your support for these families by asking Unlocking Autism to discontinue its availability.

The December 29, 2009 entry for Age of Autism is as follows:

2009 Age of Autism Awards: Memorial for Trudy Steuernagel

We present this memorial to trudy Steuernagel, the mother of Sky Walker. Her beating death at the hand of her severely autistic son serves as a reminder of the seriousness of autism for many families, and the lack of support often available.


OMG I now have found out that I as a parent and fellow Autism Mom that I am not alone. It is a bitter sweet finding but a finding with hope. Thank You for your words I truely need them today.


Thank you Lorraine. You wrote exactly what many parents feel and go through. And the bumper sticker is perfect!

Daniel's Mom

Lorraine, THANK YOU. 10 years ago we started our journey what a great articulation. It helps me explain to my family who only see us during holidays who don't know how much we need their support.

Your call to community is key!!

I am a parent of a big, strong child who as a result I have had to have back surgery and I don't take offense by the bumper sticker, it was the first thing I saw, clicked on and found out how to get one.

As a veteran of war I still fight with schools, groceries, family, friends, churches, Congressman, etc to get the help we need. Although I get in ruts of hopelessness, my cure wakes up every morning with his big beautiful eyes and for the first time in 10 years utters, "Good Morning Sunshine" as I have to him for a decade.
Why, b/c after 10 years of fighting thru interventions and working diets and suppl's,which are essential, we found Verbal Behavior Therapy and now after a decade, HE IS TALKING!!!
That's a BLACKBELT!!


Thank you for sharing your journey. Nothing said here indicated anything but deep love and compassion for the child with autism.

I think most of us Moms sense this--at least those for whom it is true in their child's case:
Autism = something is wrong. Something is horrid! Something has been broken. We SAW IT HAPPEN. It's not like Down's, where a child was born different and perhaps it was his or her destiny. I have thought about this a lot. As difficult as that journey also is, I believe the grieving does not involve an awareness that the child might be suffering every single day, and the feeling that it may have been a preventable accident, quite different from destiny. Perhaps I am wrong, I don't mean to project as I have never had the privilege of being close to a Down's child and I am sure there are many struggles. But there is a huge difference in experience when you perceive that your autistic child is unhappy or suffering, as the author of this piece does. How can that aspect of autism be beautiful to anyone? It seems to me that only the person suffering themselves has the right to decide there is some beauty in it, as cancer victims as the author pointed out. And to me that was mostly the theme of this article. Wanting to take autism off your child's back means you LOVE your child. If your child had diabetes and it might be possible to cure it, or at least treat the symptoms, would you decide instead to let the child decline rather than attempt insulin treatments because you don't want the child to think you don't love him or her!? !

It is very, very difficult to watch your child with autism--if it looks like it appears to to most of us, that our child is locked inside-- and not feel compelled to rescue or free the child from the autism, which we saw shut our child down. And sometimes that is not possible, no matter what you do or try. How can we not have anything but compassion for such a family? We all have our own journey. If those like Valerie see beauty and that allows them to cope, that's fine. But I would guess that the type of autism her child faces is not the same as that of the child in the article. If it is a severe type, and she could still find beauty, we need Valerie to write her own article and help us understand, rather than criticize a fellow Mom. We need to learn from each other.

Anna Lee

Thank you Lorraine. And thank you Valerie for adding your point of view. I appreciate what Lorraine has said. It is very supportive. I need to add something here. I find the bumper sticker from Unlocking Autism that has been attached to Lorraine's essay to be inappropriate. Firstly, I know of no mother of an autistic child that would want autistic children or adults to read such a statement and think that their condition is so unbearable that anything else pales in comparison. Yes, I know that some autism and autistic behaviors are severe and require a "black belt" attitude and level of expertise. But this advertisment of a mother's feelings is so insensitive to those who actually have autism. The public statement may be supporting the mothers, but it is insulting their children.

Secondly, there are those parents and professionals who deal with aggression on a dangerous level. They literally have to defend themselves from attacks by their children. I doubt any of them would find humor or feel support from that bumpersticker. Instead I think they would feel their actual physical struggles with their child were being discounted. I think Unlocking Autism should discontinue this bumpersticker and discourage that kind of remark from representing them.


I'm sorry did I miss something. What is beautiful about cleaning up stinky pooh off the carpet, wiping my 12 year old's bottom 10 times a day. Listening to him scream nearly everynight before he goes to sleep finally. Worrying about who is going to look after him if anything happens to me or my husband.


Autism Grandma

Re Post by Valerie: "Autism is not a horrid disease. People who choose to learn nothing and wish for a "normal" child, rather than accepting the beauty in the child they have-may feel that it is."

Our family "accepts the beauty in the child we have"...not only accepts but CHERISHES, as do all parents of autistic children who have posted here at Age of Autism. As anyone can see by reading the posts here, we are all choosing to learn EVERYTHING we can, and not "choosing to learn nothing". Lorraine has been suffering a long and sometimes horrible journey with her child due to the HORRID DISEASE of Autism. YES IT IS A HORRID DISEASE for so many children and their families.

Valerie has obviously been blessed with a less horrid version of this disease with her child, otherwise she would understand where Lorraine is coming from in her honest and heart breaking feelings.

We all struggle to focus on the positive aspects of our child's autism, especially if they are responding to therapies and making improvements. But what a living HELL it is for those children and parents who remain trapped in this kind of autism, the kind that hangs on relentlessly no matter what. And even with progress there is so much ongoing physical and emotional suffering with these poor children. My grandson still has lots of issues to contend with and he still has terrible nightmares waking up screaming and sobbing. When his language just finally started returning recently one of the first things he said was "I'm stuck". Now that he finally is speaking some words, when he has the nightmares now he screams "Mama NO Bye Bye" and "I'm stuck". He is still traumatized by his mother going to work at her business but she has no choice. He is obviously continually frustrated and feeling "stuck". Children with autism are trapped inside of their own minds and can't get out. They are in pain both physically and emotionally. How horrific this is indeed when the parents can't stop their pain even though they are continually doing everything in their power to help their precious child recover.

Yes Valerie, we want our children to recover and we want them to be a "normal child" as much as possible because we don't want them to suffer. We love them as they are, but we want to stop their suffering.




Valerie-- statements like yours always leave me scratching my head. Do you think there are heavenly rewards for maintaining a "positive attitude" when children's health is going to hell and so many children are suffering so horrifically? That so many die of seizures, wandering deaths, from school abuse?

Well, as long as you get to feel good about feeling good.

"If a better way to be exists, it is in taking a full look at the worst"-- Thomas Hardy


Thank you, Lorraine. That was beautiful.

The autism as "Holland" thing always cracks me up. Yeah, Holland circa 1944-- when you're Jewish.

Deb O.

I've been in this war for 24 years, so I think I may be able to bridge Valerie's comments with those who are still striving for improvement of symptoms or a cure.

Yes, Valerie, our children deserve to be accepted. For those, like me, who have children who have gradually improved to the top of the spectrum and are just steps from adulthood, acceptance and the opportunity to live life to the fullest is important.

I will not, however, forget that these were once happy, normally developing children who suffered vaccine reactions. My daughter in particular, now 24, is realizing the alphabet soup of diagnoses she has been given, were linked to her second DPT shot given long ago. We better understood when her younger brother had a reaction at 4 and slid into autism.

As Lorraine so eloquently puts, you write the book as you go along. Each of my children had unique symptoms, one more subtle and harder to see. I had to do some things as a Mom which I never imagined I would do. And, both my husband and I had to learn to parent in a different way. But, we never did nor plan to stop trying to improve the functioning of our children. We also work every day to ensure that other parents know the risks of vaccination and just maybe, one child will be saved from an ASD diagnosis.


"A recent study confirmed that autism moms have stress levels consistent with soldiers in combat as we often live our lives bracing for the next assault"


Thank you Lorraine


Oh COME on Valerie! The beauty of headbanging? The beauty of agonizig gut pain? The beauty of OCD and fear?

We parents DO embrace the beauty in our children. How pompous of you to suggest we don't. But the part that is hell, *is* HELL. Not being able to stop the pain your child is in is PURE HELL. It is all the things that Lorraine just described.

Pain and isolation is not beautiful.

Linda Rolett Roberson

the only experience I have had with autism is a young man I had the joy to meet, He lives in a group home and when I first started working there I was told"Gary doesn't get close to anyone"-Not true. He would come to me and say,"may we have a talk" he would then go to his room and patiently wait for me. Our discussions were usually looking over the calendar and talking about what was going to happen, He would then give me a hug, What a lovely man!!!I will try to bring awareness to this condition as I have also seen him in terrible distress hitting his head until it was bleeding.

Sue Cranmer

Thank you Lorraine. You said it so well.

Maurine Meleck

I know a lot of people like Valerie. They say-----vaccines didn't cause my child's autism, my child will always be autistic, I don't blame anyone or anything. That's just the way it move on-
Ya right, and dinosauers aren't extinct.

For Valerie the lecture and the judgement.

And please don't act like you are sorry Lorraine and other parents feel about autism as Lorraine has described. You're not- I know you're not. You know what I'm sorry about- the fact someone like you would come here to judge other parent's dealing with other situations with their children's autism than your own. Do you know how callous you seem? If you don't know autism as a horrible devestatingly illness count your lucky stars Val.

I can't express how much I relate to Lorraine's on the mark article. But what you think we should "grin and bear" it? Have an attitude transplant and find the silver lining in it all? AoA is a place to let it all out. to lean on one another. We (well some of us) know what our lives are like, we know the suffering and hardhips our children have endured. Autism (for some) is a devastatingly awful existence. Again, if you can't empathize with your fellow parents and realize what others are going through- even if your kid isn't I don't know what to say to someone like you. Grow a heart? Get some understanding and compassion....

I can assure you our children are loved and they know they are loved. And the reason for the continued desire for research is to spare other families the heartache and pain that autism brings. Autism is not a new varition on normal- for some it is a hellish existence of pain and suffering. If you can't relate- you are so very lucky. So, please save your judgement and your condescending attitude.

And many of us are advocating for services, and working towards addressing societal issues related to the autism epidemic. Are you Valerie?


Lovely, and terrifyingly true words. Those of us who are making this journey understand and recognize when a fellow parent has given us a glimpse into our truth. Thank for taking the time to put your thoughts out there, they have brought some consolation to my day. I'll use some of your analogies when I discuss my own situation with those "outside" the autism world in the future.


Thank you Lorraine, I'm going to go hug and kiss MY saint now.


I am so sorry you feel this way. And while I know the hard times are harder than anyone else can imagine, I also know that accepting your child and carrying on is really the only thing that will allow any sort of peace to exist in our families.
I also would like to see people giving time and money to charitable organizations that are built in helping the people on the autism spectrum who are already here! Why would you suggest money go to research when your child is already here? Let's find ways to help people who are here now and part of our lives and society. My child deserves to be accepted and so does yours. Autism and all. My journey is unexpected but it is also beautiful even when there is pain.
Autism is not a horrid disease. People who choose to learn nothing and wish for a "normal" child, rather than accepting the beauty in the child they have- may feel that it is. I wonder how our loved ones on the autism spectrum feel about this? Do we assume they know and feel nothing about our own attitudes?


It's frustrating that many songs say, "I'll trust You in this storm." When does our storm end?
I still trust in Him, but I don't have the luxury of seeing a definite end point to our pain. I'm not waiting out a storm. I'm trusting Him with my whole life, and my kids' lives.
Somedays, it's only the eternal perspective - there is no autism in Heaven - that gets me through the moment.

Teresa Conrick

So sad and so true. You said it all beautifully and we have got to get it out as it is the truth.

Thank you, Lorraine.

Cherry Sperlin Misra

Thankyou very much Lorraine. I very deeply feel that we need writing like yours. Earlier today this same topic was bothering me a lot. There really seem to be very few people who care about autistic kids ! and most parents dont care until the autism bug bites their own child. I think we have failed in telling the world what autism really means, and because of that we are not getting support from good people. What are the concepts that people have? - That autism is just something you HAVE - so isnt it just better to accept it? Autism is psychological- so just do some therapy and all will be well. When I think of autism I think of a child who is suffering, physically and mentally, but I believe that if we did a survey, we would not find this to be the understanding of most people.
Are there people working on this problem ,I wonder? Or is everyone caught up in the other autism issues ? I imagine that if I had an autistic child, I would be too busy trying to improve his health and I would imagine that everyone understood what I experienced every day.


I'll post here what I never would post on Facebook: 6 out of 8 bridesmaids can't be wrong...when this lovely couple's future child is diagnosed with autism, they're outta here!
When the lovely bride herself, falls into illness and depression from the autism in her home...they're judging!
When there's money and time to devote to a charitible's for curing cancer, because that's going to happen any minute!
I could go on, but I'm starting to ruin my day by thinking of what else I want to say.


Good description of an empty suitcase and the parent has to think and pick between what is useful or useless.

That was how it was for me too.

The surprises were bad too. You think okay things are not normal, but at least we know what our routine is. Then that fire bell or blender goes off and kids (teachers too) make fun or he actually starts pulling out clumps of hair!

But the worse thing was me. As a MOM I found myself in protective overdrive I have found myself saying things people angerly that I normall would never say. OR feeling like a fool in front of people most of the time. I do not take people judging me easy.

I too was insane.


Thank you so much Lorraine for your honesty and telling the truth about this horrid disorder. Autism is not some "lovely variation" like the ND jerks want everyone to believe. It takes guts to be so honest which is something that so many in denial don't have.


My heart stops from time to time, scaring the hell out of me. Once in the hospital it stopped for 16 seconds and I never noticed it, I was plugged in to monitors, doctors just around the corner, my mind was at ease, I honestly never panicked.

My son is my heart of hearts. When I feel alone, abandoned, eyes focused on his rhythm any little irregularity sends me into a state of combat readiness, all hands on deck. This is natural instinct not something I can will to do or not do. And it is taking it's toll.

Fortunately many of you have hooked me up to monitors, your bedside manner comforts me, stories of recovery and gains and hurdles being jumped focus my attention outside the lub-dub, lub-dub of my heart's rhythm and more in tune with our collective rhythms.

The truth is no one cares but us, no one understands what it is like. I even feel ashamed to complain or notice, or even speak up because my son honestly is a great kid, making progress, inches away from that window. I know any day now this will all be in the past. I still have hope.

Years ago I worked with two little girls, 5 and 8 who were both brutal victims of sadistic ritualistic sexual abuse. I did my best to find support, to find some organization, church, benefactor to help out. You would think people would want to help but they didn't. I remember how hundreds of people turned out on the beach to attempt to rescue a whale that beached itself and how more people turned up to a city council meeting to plea for aid for the homeless and how a local newspaper article during this time devoted it's front page to saving a 100 year old oak tree from being cut down. No one turned out for two little girls, no one turns out for the one in 110. And it breaks my heart.

Ms. Martin, I'm with ya.


Thank you Lorraine for sharing your perspective.

I am extremely moved by your words.


Thank you, Lorraine, for putting it all out there so boldly. Autism is war.

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