Tag Archives | understanding

Being an Autism Advocate – What I can overcome and what I can’t

By on August 4, 2011 in Autism

There is one inherent problem with being an Autism Advocate. That is that what makes a person the best Autism Advocate also makes them the worst.

Sounds strange, I know but let me break it down for you, as how I see it.

The two best types of people to be an Autism Advocate are:

  1. A person with Autism/Aspergers
  2. A parent of a person with Autism/Aspergers

Who would know more or understand better than these people? Who better to stand up for their rights than the people right in the middle of it?

ObstacleHowever, think about it. Does it makes sense for a person with social and communication difficulties and impairments to be out there, speaking out and advocating for everyone? Does it make sense for a parent, with virtually no time or money, to be devoting time and money that they don’t have to speak out on behalf of others?

Parents are tired, Autistics are introverts…. Parents are busy, Autistics are usually avoiding the crowd.

It creates quite the problem when the best people to speak are the ones that are the least likely to.

There are some exceptions and there are other people that make great advocates, but for the sake of this post, I’m generalizing the majority for the sake of making a point.

What I can overcome

Social networks have really changed the world in that, you don’t have to be a celebrity or own a national news network to reach people.

My blog posts can reach hundreds, sometimes even thousands of people in a day. My tweets and status updates are the same.

And it’s not that what I do is all that great but that the people that follow me or read my stuff are so supportive and kind that they’re willing to share it with their own networks to help me reach out further.

Sitting in the comfort of my own home, I can reach thousands so long as wonderful people allow it and support me.

What I can’t overcome

I work a 9-5 job, like many people but I feel like I could do so much more if I didn’t. I can’t write like I want to, I can’t get out there and spend time with people, I can’t do interviews with people… it’s very limiting.

On top of that, even when I’m not doing the 9-5 thing, I am often doing quite a bit around the house since my wife has Fibromyalgia. Much of my off time, and even sometimes during my work time, I am doing quite a bit of chores around the house.

I live in the middle of nowhere, which means I can’t get to seminars, conventions or even out just to meet some of the wonderful parents, doctors and Autistics within the community.

No money is another big one. I can’t even buy the books that I hear about or that I’ve been wanting to read for so long.

The desire to do more

I have an itch…. I want to do so much more. I want to be more involved, I want to be contributing far more than I am.

But at the same time, I need to be a little proud of myself. I’ve been able to do quite a bit despite having so much limiting me.

The same is true for so many other advocates out there. If you reach an audience, whether that audience is 2 people or 20,000 people… just think of all that you’ve been able to overcome to achieve that. And think about, not only how good that feels, but how much good that does.

I think we’d all like to do more… and the more we do, the more we will want to do. That’s what makes an advocate a good advocate, I think.

If you’re an Autism Advocate, or any kind of special needs advocate, I want you to know that yes, I am bragging a little in this post.

It’s ok to brag a bit, so you should to. Don’t make it a big deal but feel good about what you are able to accomplish.

Even if you do find some obstacles that you are unable to overcome, you should be proud of the obstacles that you can overcome. You should be proud of yourself.

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The TSA responds to Autism concerns over new “behavior screening” being used at airports

By on August 2, 2011 in Autism

tsaEarlier today, I wrote about my concerns over how “Autism symptoms may make the TSA think you’re a terrorist“, in which their new “behavior screening” process is essentially them making conversation with you and looking for any “suspicious behavior” which may indicate that you are hiding something.

At the same time, I emailed the TSA and asked them if they are going to include Autism and other special needs information for this training so as to avoid potentially embarrassing and very real damaging mistakes.

Their reply email comes with a disclaimer that says that I can’t copy or distribute it (which is a tad strange for an email) but I can give you a breakdown of their response.

Separate screening for special needs

The TSA has a special process for those with special needs/disabilities and what ever equipment/aides they may have. They take great care to include all areas (mobility, hearing, visual, and hidden) and has gone so far as to establish a coalition of more than 70 organizations that can instruct and train the TSA on their related conditions and issues.

They didn’t say how all of that would be included or associated with the new program they are testing at Boston’s Logan airport but one would assume that they’d make sure that those issues are brought to everyone’s attention.

Disability Notification Cards

The TSA has developed some cards which you can download (http://www.tsa.gov/assets/pdf/disability_notification_cards.pdf) and fill in. Obviously, as it says, it doesn’t exempt you from screening/questions but it will help to get your message across.

Also, in their email, they advise that anyone travelling with a person that has special needs/disability to voice their concerns and needs to the TSA officers.

The cards are a little more discreet though, than having a conversation about it in front of everyone.

If you need them later and forget about this post or the direct link, just visit http://www.tsa.gov/and search for “notification card” in their search box.

Thank you TSA

Well, they answered my question and didn’t… I still have some concerns. As I said in the first post, terrorists could take these steps which would mean they fake a special need in an attempt to get through the process.

Still though, it is a great first step and it shows that they are fully aware and doing their best to include special needs into their process.

There was a lot more about the program and how it works in the email as well, which was quite nice of them. However, as I said, I’m not supposed to “distribute” it or anything. I’m sure though, if you have questions, they will provide you with answers as well.

Contact them, as I did at http://www.tsa.gov/contact/index.shtm

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Should you tell a stranger if you suspect their child may have autism?

By on August 2, 2011 in Autism

Recently, the folks at Babble.com asked the question “Would you tell a stranger if you thought her child might be autistic?”

parentsDepending on your convictions, you would likely answer it pretty quickly, one way or another but after putting some more thought into it…. well, let’s just say there are some very good arguments for saying yes or no.

As an example, let’s say you go to a community event where you meet new people and all of the children are playing. One child is not playing with the others, aligning toys in a row, making repetitive actions and the mother seems oblivious to any of this. She just thinks that her child is going through a phase or is “quirky” (we’ve all heard that one, right?).

Do you say something to her?

I’d like to go over some of the thoughts on this:

It’s none of your business

One of the most obvious answers and likely to be the most common is that it’s none of your business. They’re not friends, family.. you don’t know them. If they don’t know, that’s their problem. Let them figure it out in due course.

In theory, if you believe in that sort of thing, everything happens for a reason. If you interfere, you may be altering their course which could have been set for a reason.

But then one could argue.. perhaps you were there, at that time, to witness the autistic tendencies as part of that “everything happens for a reason” path and you were meant to say something…. hmm….

Either which way, is it your place to be making such assumptions of other people?

Will she be offended?

Most of us would assume that acting on behalf of your best interests would be a welcome and appreciated action however we all know better. Parents don’t appreciate other people pointing out their children’s flaws, much less giving them a label… certainly if that label is associated with a disability.

Some parents would even go so far as to hear “retard” in the place of “autism” and be ready to fight you for saying such a thing. Rightly so, the “r” word is not acceptable but many people still think that it and autism are the same thing.

Early intervention is passing them by

With every day spent in this “phase”, they miss valuable opportunities at getting treatments, therapies, financial aides, a shot at school support (IEPs) and so on. They are letting very valuable time slip by which means that in this case, ignorance is not bliss.

We all know the motto and there’s even a news story now that explains it well in terms of insurance coverage: Pay Now or Pay Later

Indeed, it is true. If that mother makes no effort to help her child…. what will the child’s future be like? If you don’t say something… their future could cost them a lot more than what some therapy would cost them now.

Are you certain of their situation?

If it’s a total stranger, chances are you don’t know. This person could be in denial, which means they know but don’t accept it, they could know but just not want to tell others (“a phase” sounds so much nicer than “disorder”) or this person could truly just be oblivious.

You really don’t know.

You also really don’t know if it’s actually Autism. Perhaps it’s something else (yes, there are other disorders which look similar). Perhaps, and this may shock you, it actually is just a phase. Yes, these things can be a phase in some children that they just move on from.

If you’re not a trained professional, and even then, it’s iffy, is it really your place to make all of these assumptions about their situation?

A responsibility to each other and our community

If you saw someone about to put their hands into a wood chipper… and you knew they’d lose their hands and struggle for the rest of their lives from that moment on… would you do something to stop it?

Do you have a responsibility to help others? Well, in the case of physical harm or death (dangerous situations), yes you do. In fact, you could be arrested and charged if you do nothing…. unless you’d be putting yourself in harms way to do it. Anyway.. you get my point.

In this case, it’s obviously not that black and white and Autism certainly isn’t life or death (although some would argue that with the number of wandering cases in the news continuing to increase).

But for the future of that child, maybe even the parents (if the child remains dependent for life) and even for the community around you that may have to pay for this child should he end up in a care home… if you say something now, you could help avoid all of that.

If you say something, the parent listens, a diagnosis is made, resources made available and all goes well…. the child’s life, parent’s life and even the community itself could benefit.

Conclusion – It Depends

Ultimately, there is no right or wrong answer.

Some situations are more obvious than others, some people seem more receptive than others, some people are better at broaching the subject with others… so the answer has to be… it depends.

Still though, I think the odds are that no.. you shouldn’t. There are more reasons not to than there are reasons to do it.

It’s unfortunate that autism still has such a stigma attached to it that suggesting such a thing would be so offensive.

Perhaps, as society grows and awareness (also understanding and acceptance) of Autism increases, maybe then it would be more acceptable to talk to a stranger about it like that.

I dream of a day when people are aware and unafraid to hear that their child may have Autism. Not that Autism is such a good thing but they know more about it and more about what to do should their child be diagnosed with it.

Right now, it’s still very much unknown among the general population. It’s a mystery. People know there is no cure. People know that it’s very expensive for therapies and treatments. People don’t know what Autism really is or that some people do live a very full and rewarding life with Autism.

With further education, with further understanding and acceptance, perhaps the answer to this question will be far more obvious… and far more positive. And when that happens, everyone will benefit from the kind word of a thoughtful stranger who only wanted to help.

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The Amazing Race to Understand Autism

By on July 28, 2011 in Autism

This post is dedicated to a young man, who’s Eagle Scout project is to not only raise awareness but to give people a very unique perspective into Autism that will go a long way to their understanding and acceptance.

Justin is 14 and his older brother Gregory, 17, has Autism… the kind of Autism that makes it difficult for him to tie his shoes or speak.

Justin had the idea to have an Amazing Race style fundraiser where, not only do you race, but you also complete tasks designed to make you struggle as though you had motor skill issues, language impairments and so forth… so that you can better understand what it’s like for his brother and others with Autism.

The only downside I can see to this is that it’s local to Sammamish, WA… which means that only a certain number of people will likely be able to get involved. The reality is though that this really needs to become a national project… much like Autism Speak’s “Walk for Autism.”

I am quite impressed with the local media for not only picking this up but giving Justin and his family good quality time to explain it. That’s really very decent of them. You can view the news clip here: http://www.king5.com/new-day-northwest/The-Amazing-Race-to-Understand-Autism-126210108.html

All of the proceeds will go to Autism Speaks.

If you are in WA, or willing to get there for this event on August 13, you can visit his website to register at http://raceforautism.wordpress.com

Even if you can’t get there, let’s show this boy and his family some support for such a wonderful idea.

 amazingredbluelogo

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This is Autism, in plain English

By on July 20, 2011 in Autism

Allow me to explain, in plain English, what autism is. If you have any interest in learning about autism at all, please give this a read. I’ll even keep it short (well, compared to a textbook anyway).

Technically Speaking

To start at the top, there is PDD (Pervasive Development Disorder) which is a group of disorders including Rett’s, Childhood Disintegrative Disorder and ASD (Autism Spectrum Disorder).

Within the Autism Spectrum Disorder, there is actually another group of disorders including:

  • Autistic Disorder (also called “classic” autism)
  • Asperger’s Syndrome
  • PDD-NOS (Pervasive Developmental Disorder Not Otherwise Specified or “atypical” autism)

So being “on the spectrum” and “having autism” may not mean exactly the same thing although some people, even professionals, may use them interchangeably.

I should also mention, Fragile-X is a genetic syndrome that is not autism but may cause autism.

Something I need for you to know

First and foremost, you need to understand that every single person that is on the autism spectrum is different. That means that every single symptom and situation is different.

From here on out, everything I tell you may affect a lot of autistics but not all.

Common Symptoms

  • Communication Impairment
    This can be broken down into a few areas, such as:
    – Literal Thinking. This happens when a person is unable to, or has great difficulty, in understanding such things as irony, sarcasm, metaphors, expressions, etc. To use a phrase such as “I laughed my head off” would be interpreted by an autistic literally, they picture that your head actually came off.
    –  Inability to Understand Non-Verbal Queues. Many autistics explain that they are unable to tell what others are thinking by reading facial expressions or body language. Recognizing a person’s emotions is very difficult unless stated specifically and literally.
    – Anxiety. Extreme fear of social situations often makes socializing near impossible. Autistics often prefer to avoid social gatherings despite having a strong desire to be a part of them. Autistics often feel like foreigners, speaking another language, in a place where they do not belong.
  • Sensory Processing Disorder
    Despite being a separate disorder, SPD (Sensory Processing Disorder) is quite common among those with autism. This is broken down as such:
    – Hypersensitive.  Autistics often have an aversion to loud noises, lots of noises, bright lights, flickering lights, scratchy clothing (such as wool, seams), strong tastes, food textures and more. Anything that can overload the senses. Sometimes a simple hug can feel very painful all over.
    – Hyposensitive. Often times, people with autism have a high tolerance for pain, sometimes not even realizing that they’ve been hurt.  The same is sometimes true of all of the five senses. While a person may hate being touched at times, sometimes they have an overwhelming need to be touched. Often weighted vests, blankets, etc can help.
    – Filter. While not a sensitivity, often the brain lacks the filter that most people have to remove background sounds, smells, sights, etc.  For example, when you go into a restaurant, the music, kitchen sounds and other people talking all fade to the background so that you can hear the people you are talking to. With an autistic person, this is sometimes impossible… they hear it all at the same time, at the same level and become overwhelmed.
  • Routine / Repetition / Patterns
    An early warning sign is a child’s need to follow a strict routine, make repetitive sounds or actions to excess or to create patterns out of objects rather than play with them.
    – Routine. All children need routine but children with autism especially need it. A break in routine can leave a child feeling completely lost, out of control and overwhelmed with anxiety. The severity of this varies greatly.
    – Repetition. Children with autism often repeat words, sounds or actions over and over again for much longer than what you would call a phase. These are usually single words, small sounds or small actions… repeated over and over again.
    – Patterns. Often children will line up cars in a straight line, put their cereal into grids or lines, single out single elements from a more complex pattern or anything else along similar lines. Rather than actually playing with objects, they’ll find more joy in aligning them somehow.
  • Stimming (Self Stimulating)
    Stimming can be defined as a person’s need to produce an output, a way to fill one, more than one or all of a person’s senses (input).
    – What is it? Stimming comes in many forms but some notable occurrences include arm or hand flapping, moaning, head shaking, spinning, hitting oneself, moving one’s hands in front of their own eyes and so on.
    – Why do it? Stimming is done either to satisfy a need for input, such as a craving for deep pressure or to hear something, or as a way to block out other input, such as moaning so they no longer hear all of the other noises in a room (fan, television, people, etc) or to feel deep pressure so that they no longer feel the scratchy fabric of their clothing. These are just examples of an infinite number of possibilities.
    – Stop it? Some people wish to stop their child from stimming which, depending on the circumstances, can be beneficial or harmful. If stimming is done for self satisfaction and interferes with their ability to perform needed tasks, stopping it may prove beneficial. However, if the person is stimming to block out other overwhelming stimuli, preventing them from doing so may lead to a meltdown.
  • Meltdown
    So what is a meltdown exactly? Is it just a temper tantrum? Can a child be disciplined out of it?
    – Temper Tantrum. A means to get ones way, or to express extreme dissatisfaction with being unable to get ones way.
    – Meltdown. A complete loss of control over one’s faculties due to overwhelming anxiety, fear, pain, sensory overload or other outside pressures. A meltdown is very much akin to a reaction one may have to being tortured.

Epilepsy/Seizures

Approximately 20% to 35% of individuals with autism have a seizure disorder. About one in four autistic individuals begin to have seizures during puberty. The exact reason for the onset of seizures is not known, but it is likely that the seizure activity may be due to hormonal changes in the body.

Sometimes seizures are noticeable but most of the time, they happen so subtly that it can not be detected by simple observation.

Wandering/Elopement

In 2008, Danish researchers found that the mortality rate among the autism population is twice as high as the general population. Often times, a parent reports looking away for only a brief moment to find that their child has wandered off. Often times, they are found in neighbor’s pools, nearby woods, on highways and more.

People with autism seldom recognize the fear or danger in wandering off from the comfort of their surroundings.

Severe vs Savant

As a spectrum, autism can range from one extreme to another where one person may not be able to speak, use a toilet or dress themselves to another person that can remember Pi to over 25,000 places.

In the past, a person was considered “severely autistic” if non-verbal but today we now know that a person can actually have a normal or even high IQ despite verbal or other impairments. This means that just because a person can not speak, use a toilet or dress themselves, that there isn’t a very smart individual in there wishing to express themselves.

Also, not all savants are autistic even though “autistic savant” is when we hear the term most.

While autism can be a life long, debilitating disability for some, and while it may provide savant, superhuman like gifts to others, the fact is that for the most part, autism is a disorder which leaves people somewhere in the middle. Unable to handle a regular classroom, social setting, conversation and more but able to live independently with proper treatment and therapy.

Why an autistic person might not look me in the eye

One common recognizable sign or symptom of autism is the person’s inability or desire to look at a person’s face, or look them in the eye. Several well known autistics have described the process as “taking thousands of pictures of a person’s face every time I look at them”.

This is understandably very overwhelming and so, to avoid being overloaded into a meltdown, sometimes they will refuse to look you in the eye.

Other times, it can be described as simply a social awkwardness where they feel too much anxiety or discomfort with doing so.

Also, as with everything, this is not true of all people with autism. You’ll find that a good number of autistics really have no problem looking at you.

Causes

Other than Fragile-X causing some cases of autism, no one knows the cause for the rest. Genetics and other environmental factors (which includes vaccines) are often discussed in the media but no matter what you’ve read, no one knows the cause with 100% certainty.

Treatments / Therapies / Diets

There are countless treatments available although ABA (Applied Behavior Analysis) is the most widely used and approved method.
The most common therapies that help children are speech therapy and occupational therapy.
Diets proven to have the most positive effects include the GF (gluten or wheat protein free) and CF (casein milk protein free) diets.

No one treatment, therapy or diet will work for all people with autism although most have met with some success with at least some people. Because of this uncertainty, there have been some people who take advantage of the situation and create “snake oil” remedies which cost a lot of money yet don’t really work.

The truth is, though, that because no one knows the cause, no one knows the cure. As of right now, autism is a life long disorder with no cure.

Everyone agrees that the best chance an autistic person has at an independent life is via early intervention, which means receiving a diagnosis between the ages of 2 to 3 followed by receiving therapy, treatment and other help as soon as possible while still in the early development stage of their life.

How can you help?

  • Be understanding. Reading this is a great first step. The simple fact that you have taken a moment to know some of the characteristics and symptoms means a lot to a person with autism or their parent. Now that you know what stimming is and why it probably should not be stopped sometimes goes a long way toward understanding the person that is doing the stimming.
  • Do not judge. When you see a parent with a child that is screaming on the floor at a restaurant or grocery store, don’t be so quick to think that they’re a bad parent or a bad child. Perhaps that child is autistic and having a meltdown due to outside stimuli which feels like a constant stream of pain… such as torture. If you felt what that child has just been feeling, you may react in the same way. Autism can NOT be disciplined out of a person. It is hardwired in their brains.
  • Be accepting. If you know a child with autism, accept them for being different and needing to stim or be alone sometimes. If you’re at a party and you see someone on their own, be kind but respectful if they request to be left out of the group. If you employ someone with autism, give them a little extra room to cope with the crazy atmosphere around them and don’t be too hard on them if they avoid the X-Mas party. There are many ways you can adjust your own expectations to be accepting of their differences without having to necessarily give them special treatment.

So Remember

All people with autism are different. No one symptom is common among 100% of people with autism. No one therapy, treatment or diet works. Not all autistics are brilliant, not all autistics are non-verbal and not all autistics are dependent nor independent.

Chances are, you know someone on the spectrum and not even realize it. They may not even realize it either.

Please print this or copy it and share it with anyone wishing or willing to know more about autism.

Thank you.

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