Monday, November 15, 2010

Seeking an Expert

Is there really an "expert" on autism.

I am skeptical.

How does anyone explain the mysterious? How can anyone look into the minds of these beautiful children and know ....

why they want to do the things they do?

why they NEED to do the things they do?

Why does my son feel the need to touch the world like he does?

Why does he put his hand over his ears at a football game while simultaneously smiling at the sound of the cheering crowd? He is not distressed. But something makes him want to tune out some of the sound.

Why does he squint his eyes when overwhelmed or nervous?

Why is he so fascinated by the repetitive motion of the little things? Why does he need to drop to the ground and watch the mulch drop from his fingertips when he could be climbing the playground equipment?

Why does he look away from me when he must know how desperately I want him to look ... at .... ME.

Why? Why? Why?

Why does he open up his mouth and make a sound so obviously indicating a desire to reach me, to tell me ....


Why can't he put his lips together and produce the sounds he so desperately wants to say?

I can sit here night after night, and type away at this computer if I want to.

I can type for hours, well after the Cheezits are gone, and the possum who eats all the cat food has come and gone from my garage.

I can talk for hours to any friend kind of enough to listen.

But my son can't say a blasted thing.

And nobody can tell me why.

Is there an expert on autism?

Well, there are plenty of people who can describe the symptoms. There are people who can diagnose your child while sending you on your way with all the bedside manner of a sloth.

But there is no expert here in my living room. There was no expert telling me how to keep my family together. There was no expert telling me how to maintain my sanity while processing all of this confusion and hurt.

Maybe some day ....

the experts actually will know something.

Leah blogs at


  1. This may not be what you'd like to read at the moment, but I've been there. We've ALL been there. Some days, I want to hit my head against the wall too, thinking it'll somehow help me understand my kids better (it works for them right??) Anyway, I found this article recently and it made me feel a bit better (though not by much). Good luck!

  2. Are parents not usually the best experts? I was just reading this (not my blog!) from a mother who knows more about autism than most. What she writes actually helps people - check it out:

  3. WHY WHY WHY!! When you find this expert, let me know!! I have a ton of my own WHY questions. In fact, I'm ready to ask someone with a crystal ball!!

  4. There will be no acceptable experts until we get an etiology worked out... which may be why ABA is the remediation vehicle of choice: your conditioning around the syndrome, not getting rid of causative factors.

  5. love to you. I hear you loud and clear

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  7. I have been working with student with Autism for some time now. There is never a time I've ever considered myself an expert as each child is different in their specific idiosynchrasies. The comminality though is that they experience the world a different way to other children. I tend to work with older austistic students and if it is any concelation age does improve things. Input from a speach and language therapist is also really benificial. The connections of speech will come with time and therapy...Lastly asking questions is the start to finding answers and dont carry the world on your shoulders..

  8. Someday. Today I wish that someday you will know. Someday you will understand. That you will be comforted by the knowledge that you did not remove his hands, that you did not stop him watching the mulch fall or any of the things that you so desperately want him to stop doing. That you allow him to be who he is. That you make sure that Today he is loved.

  9. Leah, I feel like you are me writing that piece. I totally get it. I have always wondered why my 7 y/o autistic little boy covers his ears and smiles at the same time. He is like an angel. Sometimes I think he might really be one. I just pray for speech every day and condemn the freakin' MMR that took it away along with other things.

  10. When I think of what came to mind after reading about Dolphin Human Therapy, I must say that the vision in my mind’s eye is completely different than the reality of the program! Of course, what stuck in my mind was the picture of my child happily frolicking with the dolphins, and maybe the energy of the animals touching my child in such a way as to “heal” her.

    As I learned later, after attending a two week course of therapy, I was completely mistaken. Not about the vision of my child frolicking in the water and having the time of her life, but rather not fully comprehending what this program is about. It is about hard work on everyone‘s part, expectations of my child, realizations about our child and our family, and the commitment of the therapy team to provide us with the tools to continue the success.

    Dolphin Human Therapy provided my child with a way to achieve goals and expectations that we never thought possible. DHT, just like any other therapy, creates goals, both short term and long term for the children. Because the therapy is concentrated on specific goals for the child that are meaningful, appropriate and creative, each student’s plan is individualized to fit their needs. Therapy happens for several hours per day, not only in the water (with the dolphins), but also in a classroom, natural environments, or sometimes in social situations outside of the therapy site. The family is such a big part of the process, watching every day, and very often being part of the therapy. Siblings take a major role in supporting the brother or sister, unlike the typical therapy setting. What a great way to bring the sibling together!

    What I learned from the process mostly had to do with the motivation provided by this unique, loving and inspirational program. My entire family changed, our expectations changed, our hope for the future changed, and we have become so different when looking at the challenges our daughter faces in her future. With the help of DHT, we now understand how to use the tools to continue the positive changes. The expectations for the future are bright and I thank Dolphin Human Therapy for helping to realize the potential for the future.

  11. As Casdok says, given time we become experts, only as to our own children I expect and of course it keeps changing so we keep learning.

  12. Hey sweetie, I was just thinkin' about you and your 'guy' today and thought I'd check in and see how your year's goin'.

    God bless you and have a marvelous day!

  13. Amen with the mother, you become the expert. I don't know what these kids are learning in med school.

  14. I get it and wo the heck knows... arg...

  15. Hi,
    I'd like to comment and see if I can help shed some understanding to your questions. I am a 32 yr. old mom diagnosed as a child with sensory integration disorder. I have a 7 yr. old on the spectrum as well.
    Here is how life feels to us that have sensory integration disorder. We are so very sensitive due to a malfunctioning nervous system. Our sensitivity to the environment varies depending on the severity of our condition and cause. Some of us cannot deal with loud noises or bright lights, some of us have poor balance or coordination (maybe we get dizzy or scared trying to play out on the playground. Point is, many children on the spectrum are not at the same level as the other children their age due to a damaged body and mind. they are strong in just a few areas and need lots of help in other areas.) Some children are very sensitive to loud sounds or bright lights, smells or textures (like food or clothing)even to the point that it is frightening or aggravating. I know for sure if I run the blender at home, my son on the spectrum will cover his ears because the sound overwhelms him. He has learned that is a more appropriate response, rather than lashing out, which he would do a few years back, or screaming. If I run the vaccuum cleaner, it is overstimulating and he might run and scream to drown out that noise with his own, because he is feeling overwhelmed by the loud motor running.
    Myself, I am sensitive to things like clothing and sounds, and especially to other people and their moods. Tight pants or rough clothing can feel downright painful. My spouse and his family are Italian and talk very loudly. My spouse likes to blast the TV in our home. The noise becomes so overwhelming I sometimes have to completely tune him out, or hide in the next room. It's too aggravating, and if I haven't slept, am upset or sick, can be downright painful.
    People overwhelm me if they are too close, loud, or if I am constantly around them without a break. Sometimes when I get no break from people I will feel overwhelmed and cry. The only thing that helps the pain is heavy pressure (it distracts my overwhelmed mind) or being alone for a good while where it is quiet. When I was little, it felt painful to look someone in the eye. I can't tell you why, maybe it is a vitamin imbalance that causes it, but it's just hard for me to keep looking at someone's face during a conversation, especially if it is someone I like (cute guy, etc.) So people tend to think I am not interested in them, when it's not the case.
    Maybe your son experiences this when he tries to look you in the eyes, or maybe he can't look you in the eye because he is distracted by something. Is there alot of things going on in the room, lots of background noise (you mentioned he is sensitive to sound earlier.)
    His body might not be ready for the challenge of the playground (the strength to climb or the feeling of dropping as he slides). The mulch or sand might feel so nice to his fingers and be much less overwhelming.
    I can't answer why your son can't speak. He may have speech processing problems that make it difficult to form the words, etc. All I can say is to keep trying. Do more research and see if you can get him to the best speech specialist possible (someone who can diagnose specific speech issues and treat them. You sound like such a wonderful mom.

    Life can be very painful, being like this. I am a loner by choice for them most part because having lots of friends and people around is just too overwhelming. But it is hard being alone as well, especially when my son needs my help learning to bridge the gap socially.
    I have found that a gluten and casein free and sugar free diet makes the noises and sensations of everyday life much less painful.


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