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Autism is

By on August 8, 2012 in Autism

I would like to talk to you about autism. I know, we talk about autism a lot, you and I. But somehow things have gotten off track and I really think that I need to make something very clear. Not for for you or my neighbor or for other people but for me, right here, right now.

I have been living with autism my entire life and didn’t even know it. It wasn’t until I discovered that my son has autism that I truly came to grips with what it really is. And I’m not talking about what I’ve read in medical research studies or transcripts or expert opinions or even public opinions. What I mean is, I know what autism is, to me.

autism isThis may sound a little strange but in a very general sense, autism is everything and it is nothing too.

Autism is the way a person perceives the world around them. It is the way they take it in, interact with it, experience it, process it and live with it. It’s the filter with which all reality flows through before becoming our own reality. It shapes a person’s past as well as their future. With each step forward, all that is involved in that step flows through a vail of autism which invariably alters the course they take towards their next step. Each step being a direct result of the step before it, exponentially affecting further steps ahead. We become a product of our combined experiences, each of which, affected and altered, whether for better or worse, as an effect of autism.

At the same time, autism is nothing, neither tangible or quantitative in it’s existence any more than any other thought, memory, expression, synaptic response or neurological interpretation to stimuli that every living thing is privileged with in it’s existence. It’s a unique perception unlike any other making it exactly the same as any other. It’s a tasteless, touchless, odorless, inaudible and invisible anomaly that isn’t really there.

There’s more, and this is important. So hear me out.

Autism is not a fight between parents. Autism is not a battle with the school board. It’s not about who is functioning higher or lower than someone else or even about what “functioning” even means nor is it about who should and shouldn’t be cured.

Autism is not about what a person looks like and it’s most certainly not about tendencies that a person might have, homicidal or otherwise. It’s not about taxing the system or making life hard on a parent and it’s definitely not about organ transplant bureaucracy.

Autism is not politics. It’s not religion. It’s not about you or me and it’s certainly not about you versus me.

I am tired. I’m tired of all of this.

I’m tired of reading stories in the news about mothers killing their autistic children. I’m tired of people making horrendous and false claims in the name of autism. I’m tired of the fighting, I’m tired of the name calling and I’m tired of the people who can’t admit when they’re wrong. I’m tired of people that are judgmental and I’m tired of the people who think it’s funny. I’m tired of people telling me what I should and shouldn’t believe, what I should and shouldn’t say and what I should and shouldn’t think.

I’m really, just tired. Very tired.

So here it is, as simple as can be.

Autism is me. It’s my son. It’s the little girl who can’t speak but screams with every breath she takes. It’s the little boy that completely loses control one moment but creates his own computer operating system the next.

Autism is the man that needs a heart transplant to live. Autism is the young woman that goes to Washington to fight for people she doesn’t even know but loves.

Autism is the life taken far too early by the parent that didn’t know what else to do. Autism is the life that wandered away from safety, scared and unknowing of the dangers around them.

Autism is not a disease. Autism is not a battlefield. Autism is not an opinion.

Figure it out. Work it out.

Because autism is a lot of people.

Autism is the perception, the experiences and the reality that effects and shapes what is to become a person’s life and yet, it’s nothing too, for all the same reasons.

It’s people.

It’s lives.

Autism is.

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Placing a value on a life

By on August 7, 2012 in Autism

Bullies see some people as having less value than others.
Racists see some people as having less value than others.
Sexists see some people as having less value than others.
Doctors see some  people as having less value than others.

Yes. Doctors.

Early this year, a mom named Chrissy Rivera wrote a blog post called Brick Walls which chronicled her battles with the children’s hospital there. Her daughter Amelia was being denied a life saving kidney transplant on the grounds that she was “mentally retarded.”

The doctors, using what ever measuring stick they had at their disposal, decided that young Amelia’s quality and potential length of life was of lesser value than other people that could use a good kidney.

The special needs community all around the world talked about Amelia’s story, signed petitions and even bombarded the hospital with angry phone calls and emails.

It’s been a long 8 months since that blog post was written but Amelia will be receiving a brand new kidney from her mother.

The story should end there, in triumph but sadly, it does not.

Paul CorbyPaul Corby, a young man of 23 is going to die unless he has a heart transplant. He knows this because his father died at the age of 27 from the same condition.

But doctors are telling his mom, Karen Corby, they won’t do the surgery because he has autism.

Actually, they claim that they don’t know how the steroids will react in his system, how he’ll handle multiple procedures and that taking care of himself afterwards is complicated.

In other words… because he has autism.

Again, doctors are using an imaginary measuring stick to place a value on a human life and determining whether or not it’s worth even attempting to save.

Here’s the problem with placing a value on a human life… it lessens all of humanity.

It’s sad and pathetic enough when your random low life does it to further their own gains but when a well educated and respectable person that has sworn to practice medicine ethically and honestly, to save all lives, does it, it really speaks volumes to just how much of a greedy, barbaric and filthy society we’ve truly grown to become.

Dr. Suess said it best when he said “A person’s a person, no matter how small.”

It doesn’t matter if you see a child, a senior, a disabled person, man, woman or anything else that you perceive a person to be; a person’s a person.

What you should be seeing is a life. A human life.

There is no measuring stick and there is no value.

All life is priceless.

It can not be measured.

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Please sign Karen Corby’s petition to get her son the surgery he needs: http://www.change.org/petitions/help-my-autistic-son-get-a-life-saving-heart-transplant

 

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My advice for parents that have just received their child’s autism diagnosis

By on July 23, 2012 in Autism

One of the more common questions I get from people that give seminars, write journalism columns or otherwise somehow speak to many people at once is, “what advice would I give to parents that have just had their child diagnosed with autism?”

Here it is, in 4 parts.

1. Be selfless

When the doctor says those 3 scary little words “Autism Spectrum Disorder”, your heart sinks. No matter how positive you are, no matter how optimistic and no matter what great things you’ve heard about autism… it’s a heavy weight to bear.

In that instant, all of our hopes and dreams for our child are lost. We see a little human being with all of our visions of the future beyond their grasp. We see a child that will never be all of the things we thought they could be.

The thing is, those are our hopes. They are our dreams. They are our visions of the future. They are what we think that child should grow up to be. Us… us… US.

Letting go of that is hard. Some parents are never able to let that go.

But you have to realize, that’s your selfish side speaking. And I’m not saying that it’s not ok. It’s perfectly understandable and acceptable to be selfish where it pertains to your child. We all want what’s best for our children. We all want our children to reach for the stars and beyond.

But, you see, they will reach for the stars. It’ll just be in a different way.

They might not grow up to be like mom or dad and they might not even grow up to do all the other cool things you’ve imagined they could do but what they do decide to do, will be amazing.

They might not be your dreams or what you envisioned but, if you learn to let go of that and support your child in their dreams, you’ll find that nothing was ever truly lost.

You may be saying, “that’s all well and good for children that progress well and go to school and can manage on their own but my child will never have that”, it is not my intention to dismiss your burden. And all of the things I’m saying here will still apply. It will just be even harder still. And to you, I’d like to address this further in the next part…

2. Take stock in what you have

Sometimes I meet parents that are just so dark. They feel like they’ve lost everything and that their child was lost to them. They really believe that autism has stolen their child and ruined their future. And it hurts. It hurts me because no one should ever have to feel that way. And there’s nothing I can say or do that will help them.

But maybe, if a parent who is on the path towards feeling that way can be reached out too, perhaps those feelings can be prevented or avoided.

I’d like to tell you about my visits to Sick Kids Hospital with my son. One time for surgery and one time for allergy testing.

Walking through a place like that, you see children without hair and looking very pale and weak. You see children missing limbs or even an eye. You see children that are unable to see, hear and even those that are unable to move.

The hardest, I think, is seeing parents that are holding each other, crying so hard that in one moment are crying out louder than you’ve ever heard and in the next moment, crying so hard that they can’t even make a sound.

They moved into the hospital to be with their child in those final months, sometimes years. They know real loss. They’ve lost their house and jobs. They’ve lost the lives they once knew because for the time they’ve been in there, life has moved on without them.

But their child was worth it. For as short as their life was, it was a life. A beautiful and wonderful life and that life deserved to be loved. That child struggled for every day that they could.

For those parents, it was hard. Very hard. Harder than I could ever imagine it being and will probably, hopefully, never truly know.

But being there was worth it.

The reason I’m saying this is that, whether your child has autism or not, your child is right there, in front of you and your child needs you to be there with them.

Don’t be off fighting your battles or mourning your losses. Instead, move in to their room and be there with them.

Yes, you could take away from this story that things could always be worse or that they could always be better but that’s not what I’m trying to tell you. Instead, do as those parents did, do as they wish they could continue doing right now.

Take stock in what you have and live it. Your child has autism. It’s not a death sentence, it’s not an ending. Their life will be different than what you expected and it might even get really hard, but your child is right there wanting you to be a part of it.

3. Support is where you give it

It might not seem like it at first, when you know so little about autism or the struggles that it will bring, but your experiences are already and will prove to be quite valuable.

Every day, people are sharing their stories online and in support groups and one day, if you’re willing, that could be you.

Right now, someone is wanting to hear about the process you had to go through to get the diagnosis complete. Someone is wanting to hear about how you are feeling right now. Right now, someone is wanting to hear that they’re simply not alone.

If you are willing to reach out, even just a little bit, people just like you will be wanting to reach back. But if you close yourself off and bury yourself in that feeling of being so very alone, which we all feel (it’s not just you), you’ll miss all of those shared stories and all of those shared experiences. That one smiling face or reassuring word that you needed at just the right time will be missed unless you are willing to first step out and offer a warm smile too.

Autism is so very different from person to person, family to family, life to life but at the same time, we all share something so common and so fundamental that we already have this bond that we only need build stronger… and that’s our children. Our children need us.

What more reason do we need to support each other?

Unconditional love4. Love unconditionally

Whether your child has autism or not, can remember Pi to a thousand places or bangs their head against the wall, will go on to big and successful things or live out their days in a care facility…. no matter what, you must love your child unconditionally.

Many people say it as just a figure of speech or, while understanding it’s meaning, don’t really take into account the real scale of it.

Loving unconditionally does not mean that you love your child despite autism. Loving unconditionally means that you love your child with autism.

That no matter what your child does have, doesn’t have, does do, doesn’t do, will become, won’t become, who they were, who they were not, none of it matters, not one piece of any of it will ever take away from who your child is or the love you have for them.

You don’t get to love your child except for the part of them you don’t like. That’s not how “unconditionally” works.

When you fall in love with your true love, your soul mate, your bride or groom to be for the rest of your life, you accept them at their best and their worst, they’re best features and even their faults. You love them for who they are and wouldn’t change a thing.

The same thing applies, even more so, for your child.

Love your child for who they are, not for who they are even though you wish they could have been someone else, or someone more. Love your child for what they can do, right now, not for what they can do even though you wish they could do more.

Love your child. Period. Just love your child. Your child is perfect because your child is your child.

One day, maybe not today and maybe not tomorrow but one day, you’ll look back and realize just how much of a difference that really makes. It may seem like such a trivial thing at the time but it’s not.

One day, your child will look back and will know that they were never meant to feel like less than they should be. They will never feel like a disappointment in your eyes. Not even a part of them. They will never feel like they were the cause for your lost hopes and dreams.

What you do today, by truly loving unconditionally, will be your autistic child’s source of strength in years to come.

Do you see how important that is? Do you see how powerful that is?

What I’m saying is, without true, real unconditional love, one day, your child will believe less in themselves than they should, than they really need to, because they’ll look back on all the times you were disappointed in how they were less than they should be, less than you wanted them to be. And they’ll doubt themselves. They’ll feel what you felt.

And it won’t be the autism that holds them back, it will be because of the flaws and faults you saw in them that whole time. They’ll believe it because you believed it and it will stop them from achieving their true potential.

I know, if your child was just diagnosed, that’s a lot to take in and it’s even harder to do. Chances are it will take time and even though it seems like a roller coaster of a ride, you do have time.

Just keep it in mind. Loving your child, unconditionally, truly unconditionally, could be what makes the biggest difference in their life. Not the autism or any other struggles that autism can bring.

Your love. It’s just that powerful.

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Why Do Autistic Children Need to Lose Weight?

By on July 21, 2012 in Autism

Autistic children usually suffer from problems related to behavior, communication and social interaction. Therapies for autism are usually directed towards these problems, but fail to focus on other concerns surrounding autism.

Aside from the above behavioral problems of children, autistic individuals may also have problems regarding nutrition. There may be difficulties surrounding an autistic child’s diet that may lead to under eating as well as overeating. Between the two, overeating is the major problem in autism.

Reasons for Weight Gaining in Autism

Most autistic children are observed to be overweight because of overeating. There are a lot of reasons surrounding autism as a cause for being overweight. It is important that caregivers as well as health care providers understand these mechanisms in order to undertake essential measures to maintain the ideal body weight of autistic children. Reasons for gaining weight include:

  1. Physical

In individuals with autism spectrum disorders, the hypothalamus may not function properly. As a result, a child with autism spectrum disorder (ASD) may have the inability to know when they are already full, leading to overeating. The hypothalamus is an important part of the brain that regulates food intake and the feeling of satiety.

  1. Coping Strategy

Some autistic children use over eating as a coping strategy. ASD usually provides children with various sources of stress such as sensory integration dysfunction, problems in communication and social interaction. When they are under stress or have a low self-esteem, they resort to food for comfort.

  1. Obsession

Children with ASD may also have obsessive behaviors that focus their interests on these matters. In autism, children may also include food intake or food itself as one of their special interests. This leads to overeating and subsequent weight gain.

  1. Sensory

Children and adults with ASD may also have sensory integration dysfunction. This condition affects how people adapt to different sensory stimulations. In line with this, children with autism may see food as something that provides sensory satisfaction, contributing to over eating and weight gaining.

Since autistic children are more prone to becoming overweight, proper supervision of their diet is very important. Maintaining an ideal body weight prevents other potential complications of autism.

Children with autism have greater risks of developing heart disease than the rest of the general child population. Maintaining an ideal body weight prevents the possible development of heart diseases.

Ways to Prevent Overeating and Weight Gain

There are a lot of strategies that can be implemented in order to control over eating and prevent weight gaining in autistic children. These include:

Adjusting the environment

Controlling the environment is the simplest way of preventing overeating. Caregivers should limit children’s access to foods by putting locks on cupboards and fridges, keeping foods in out of reach places and avoiding leaving foods out in accessible places.

Autistic children also respond very well to visual reminders so putting no entry signs on fridges and cupboards may help in preventing them from accessing these areas of the house. With these measures, children with autism will only be able to consume foods at scheduled meal times.

Provide visual reminders regarding food intake

As discussed earlier, children with ASD have good response to visual reminders. Based on this, employing the following may help reduce food cravings and food intake:

  • Showing empty saucepans to help them understand that the food has all gone.
  • Displaying the time of the next meal.
  • Having food charts to allow them to differentiate healthy foods from unhealthy ones.
  • Using visual emotional tools to help them express their needs.

Children should also have behavioral therapy to help them adapt more effectively.

About The Author

Dr. Amarendra, the author writes on weight loss programs, news and discount coupons. The weight loss diet programs include Weight watchers and Nutrisystem, and you can read full review, discount coupons at Weight Loss Triumph.

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Autism and empathy – Here’s another way to look at it

By on July 20, 2012 in Autism, General

EmpathyEmpathy:
The ability to understand and share the feelings of another.

There really is a severe lack of empathy where autism is concerned. Allow me to demonstrate.

  • You’re at a grocery store and your child has a complete meltdown and someone says “Can’t you control your child?”
  • You go to a restaurant and your child has trouble sitting still and someone says “Those people really need to discipline their child.”
  • You look really tired and worn out and someone says “Parenting can be tiring. You’ll get it eventually.”
  • You’re explaining the struggles that having an autistic child can bring and someone says “Oh please. All kids do that!”

Do I need to go on? Are you starting to see where the lack of empathy comes into play?

And this is just for the parents. Here’s a new list, from the autistic’s point of view:

  • Just go and play with the other kids. You’ll have fun if you just make yourself do it.
  • It’s not that loud. Just deal with it.
  • You’re doing it my way whether you like it or not.
  • Look me in the eyes when I’m talking to you. Stop being so rude.
  • You have to give me a hug or you don’t get what the others got.

Again, the list could go on and on. But I think you’re starting to get the picture.

I won’t even go into the whole bullying thing. I think it’s safe to say we can all figure out where the lack of empathy comes in when someone is bullied, autistic or not.

Yes, there’s a very distinct lack of empathy but it’s not necessarily coming from the autistics themselves.

Sure, some autistics might not understand the thoughts or feelings of others. But then again, some autistics might just not care. Maybe it’s because they don’t understand but maybe it’s because it just doesn’t matter all that much to what they’re doing at the time. Then again, maybe some autistics care very deeply and are just unable or incapable of expressing it.

That’s a very basic and rudimentary way to look at it. For more details and examples, check out Autism and Empathy.

The bigger problem, as I see it, is the lack of empathy towards autistics, not from autistics.

Instead of wondering if someone is caring about you or your feelings, consider how you can care for theirs.

That’s the great thing about feelings. You don’t need to get them to give them.

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