Autism: What they want you to know

Recently I posted a question on several autism Facebook groups and my own Facebook page. The question was: What do you want people to know about autism? The answers not only provide an educational view but demonstrates varying views of having autism. I'm going to go over some of those response here and I hope you find them enlightening. As always, feel free to leave a comment (comments moderated for language).

Answers:

-Autism is treatable, not contagious, not the end of the world, not a death sentence: From mild to severe, autism's comorbid effects are treatable and manageable (though to varying degrees). Parents of children with autism want you to know that their children are under medical management and not going to drop dead in the middle of some grocery store or park. In the same light, if you are a parent of a newly diagnosed child, it's not the end of the world. Learn about autism and research it heavily. It's one of the best things you can do. Finally, autism is not contagious. No one is going to turn autistic by being around someone with autism. I don't care if he or she sneezes on you directly. You may catch a cold, but not autism. So there's no need to snatch up your kids and flee the neighborhood park on sight of anyone with autism.

-People with autism can rise above their challenges: Even some children or adults with severe autism may surprise you. While there are people who need help for the rest of their lives, there are just as many (more in fact) who can do all sorts of things. There are lots of children who are in mainstream classes in school, capable of dressing themselves and learning complicated tasks. So, just because someone has autism, it shouldn't be assumed they'll do nothing for the rest of their lives.

-Don't apologize to us: One parent pointed out the annoyance of people sympathizing with her as if her child were already dead or lost forever. "Oh, I'm so sorry to hear that" is fairly insulting. As a stranger you don't know anything about the person you're sympathizing for. How do you know they need it? How do you know how they even feel about autism? They may be managing perfectly well and only told you for sake of education and understanding. I've had this said to me over my own autism and I said "Not needed, it's my challenge and I live with it just fine".

-Autism doesn't stop because of age: Several parents want you to know that autism doesn't mysteriously go away because of age. It doesn't stop because someone turns 6, 7, 16, 21, or 60. While a select few have treatments that can effectively bury their autism, most will always have something that shows. Many will continue to need certain supports or treatments their entire lives. Remember the above as I say this, though, because needing support or treatment doesn't mean you're a total invalid.

-It needs to be managed, not fixed: People with autism, who area able to communicate this, want you to know they don't need to be fixed. As above, autism is treatable with various support, training, and even the occasional medications. While needs vary by person, it doesn't mean they are broken.

-We have feelings, are still people, need friends and social interaction too: It's also said that just because someone is non-verbal, doesn't mean the don't understand you. There is a movie called "Mozart and the Whale" where the main character is a man with Asperger's who runs a support group. He says in the movie, "We actually want to socialize, we just suck at it". Again this isn't typical for everyone, but it's fairly true by my experience. So, keep in mind that, just because their condition can isolate them, it's doesn't mean they like it or want to be that way.

-It's an invisible disability: It's not a fad, over diagnosed or over blown. Not everyone is disabled by it, but some are and some severely. Just because you don't see missing limbs or deformities, doesn't mean they have no struggles or aren't disabled. Most people who make the insulting observation: Well you look normal, are forgetting something. I have yet to meet just one person who says this who is a doctor. People with autism or even bipolar, don't want to hear about how normal they look. They find it belittling of their struggles and insulting. Having these conditions have nothing to do with how we look. We would like you to remember that.

-Too often mistaken for brattitude: While behaviors still need to be monitored, children with autism will act differently than typical children. They will behave in extremes and are usually delayed in maturing. That means an 8 year old may very well behave emotionally and socially like a 3 year old. These kids aren't being spoiled brats (in most cases), they are struggling to cope with the world around them.

-Autism affects the whole family: It takes a village to raise a child. That couldn't be more true with autism. Having to deal with an autistic child affects everyone in the household. Not only does the child need support, but the family does too in their own way. Siblings may get upset because they feel their autistic sibling gets away with more than they do. Adults may clash over support issues. It's not easy to balance an autistic household.

Finally, just two more. While I would like to post all of the awesome comments I got, I just don't have room.

-It's a manmade pandemic: I have to post this and call it to task. Remember what I said above? A pandemic is an epidemic of infectious disease covering large areas such as continents or world wide. So the comment is incorrect in the idea of a pandemic because autism is not contagious or infectious. It's not an infection. But manmade? That's entirely possible and even probable. Generations of exposure to major pollutants like lead, asbestos, chemicals, drugs, and yes, even mercury with varied environmental factors have damaged our gene pool (how could they not?). At this point, there is no single factor that causes autism, rather a collection of factors. So, did we do this to ourselves? Maybe.

-It's a gift not a burden: This comment struck me as important too. It shows that not everyone with autism in their lives thinks of it the same way. There are plenty of people who say "autistic and proud" and it doesn't slow them down much. They say they are fine in life and need no assistance or treatment. We do need to remember however, that this is not true for everyone. Not everyone feels gifted, is gifted, or can go without support. We need to respect each others feelings and realize not everyone is affected the same by autism. Also, just because you are doing awesome, doesn't mean everyone can do what you do. The fact of this demonstrates the autistic blindness to other peoples conditions that comes with being autistic. So please remember, not everyone feels gifted.

So, feel free to leave your own comments here about what you want people to know about autism. I had lots of great comments and I'm sorry I couldn't post them all.

And the bottom line, autistics are people too.

Autism: What's your child's special skill?

See that question in the title? It's a common and yet fairly ignorant question and I'll tell you why it's ignorant. It assumes that every child with autism has some savant super ability that puts them on a pedestal or makes them a circus attraction. This is a situation explained in the book Understanding Autism for Dummies. Be sure to check that book out if you haven't already.

So where does the confusion come in? Aren't we always pointing out the cool things our kids can do? Why do we do that? We do that because we want others to know that our kids can do just as well as any skilled child without autism. We don't do it because we want out kids to be circus attractions. We don't do it because we want it assumed that all autistic kids have some special ability.

Do we have special abilities? Maybe, but our attention to detail for our special interest (for those of us who fit that description)really don't make us any better than someone highly skilled in their own profession. We just want it known that we can fit in somewhere, there is a place for us. It's part of wanting that understanding.

So, for those parents who feel sick in the gut at strangers asking them that special question, I have some fun answers for you. This is in the spirit of having a good laugh. Of course, if you feel your child has (or he/she actually does have) a "special skill" then that's awesome. You should definitely go with what you feel best. Till then, here are some answers that will definitely stop the ignorant onlooker cold.

Person: Oh, autism? What is your child's special skill?

Parent:
-He juggles baboons while balancing on a rubber ball.

-He fights lions with his teeth.

-He's a tax attorney. Not bad for 8 years old, right?

-He's a stunt driver.

-He's a brain surgeon.

-Why, he just joined Hell's Angels. He sure loves his bike!

-He builds explosives.

-He's a sword swallower.

-He's a third world dictator. Took over two more countries just last week.

-He barks and chases cars.

-He's a Marine Corp sniper.

-He's a serial killer. Watch out if he gets his hands on a banana.

-He wrestles alligators.

-He's a gangster mob boss.

-I don't know, but he's great at endangering himself daily.

-He puts pencils in places you couldn't imagine.

-He can fly and shoot lasers out his eyeballs.

-He's a professional bodyguard, do you need protection?

-He eats things, all sorts of things.

-He makes noises that will tear your ears off.

Of course, you could just tell them that he's just like any other child but with a few differences. Even so, I hope you had a good laugh, we could all use one from time to time.

Autism: Fitting in

For families with disabilities of all sorts, fitting into the local social dynamics can be quite a challenge. When your condition makes social skills hard, it's even worse. Not only do you get the judging eye of society cast at you, but responding to it is hard.

I'm sure everyone has had their day being shunned for one thing or another. Plenty of people on the spectrum who read this know exactly what I'm talking about because they've been through it themselves. And the outcasting of peers does little to help a struggling person do any better. Bullying and rejection cause increased anxiety, further psychological damage, and more stigma on both sides.

So what can you do for your kids or yourself in the face of social adversity? Maybe if you don't fit in, you can just pick up and move somewhere else? Not quite. Most people who suffer from these conditions (heck most people in general) don't have the funds to just pack up and ship out when things get tough or because they "don't fit in". The truth is, the only time you should move is when it is unsafe for you to stay or you can increase the positives of your life (new careers).

The first key to anything is education. The next is learning as much as you can about society and where you can go as possible. So, actually, that's education both ways. The worst thing you can do is seal yourself off and not go out anymore.

You have to go out and find places you can be. If your direct neighbors aren't very nice, don't hang around them. Seek out groups of people that are more like you and more accepting. These can be school groups, hobby groups, or people of various similar interests who just hang out.

You have every right to live and be where you are. With that out of the way and some ideas for groups to find, how do you fit in to basic society? Some people say you don't have to, but there are a few things you need to keep in mind. A few tips:
For either yourself or to teach your child (teaching children should start early, but it's not too late, right?)

Morals: These are rules of respect people live by and they can get complicated. Start with these simple ones:
-Keep all your body parts to yourself, minding personal space of others. Do not touch anyone without their direct permission or invitation. That includes their property like purses or other items.

-Respect the privacy of others and mind what is personal and what is not. Things that are personal that you should avoid commenting on are sexual issues, money, and a person's own conditions or appearances.

-Harm no one. Avoid fights and do your best never to hit or kick anyone. This includes self defense issues where you could walk away.

-When talking to people you don't know, address them as Sir, Ma'am (or Miss if "younger"), or by their occupation such as "officer". Speaking politely to people helps a lot.

-Respect the beliefs of others, even if you don't believe them yourself. This one can be hard and can get you into trouble with large groups of people. While you are entitled to your own opinion, you will find less stress in life if you keep it to yourself. You don't have to believe what others do either, take comfort in that.

-Respect laws and the rights of others. Don't steal, rob, or commit crimes. Stay out of drugs and alcohol. Some communities are alcohol heavy and I've seen them, but I don't drink. That has gotten me laughed at, but never cast out. I just tell them to be sure and enjoy on my behalf.

You don't have to do everything people in your community do unless there is a law or it's a matter of respect to others. Situations vary, but this is something I have found to be a truth in my wide travels.

As it is, we cannot be expected to be "normal" because we are not. Some of us are more eccentric than others, yet harmless. If you are doing something that makes you stand out in a way that could be dangerous to you (like failing to wear clothes in public) you should change that. If you just dress more colorful than others, you may be laughed at, but you should ignore them. They have no right to carry that any further.

Again, these are basic tips, nothing is perfect for everyone. What can you do?

Diets for Autism

If you are searching for information on the internet super highway for autism treatments, you will find information about diets.

The most popular are the anti-casein/gluten diets. Casein is a protein found in many dairy products and some hot dogs. It's getting easier and easier to find products that advertise a lack of casein. Gluten is a protein found in grains. There are "grain" products and flour without gluten now, but you may see a slightly higher cost to get them. These costs are improving with the popularity of the diets and existence of allergies.

There are reports that support the effects of this diet. Some claim that they have seen co-morbid effects of autism all but vanish by eliminating casein and gluten from children's diets. While this is worth trying, there are just as many families who report no changes at all. Since there are multiple forms of autism and it affects everyone so differently, be prepared to have to try more than one avenue of diet.

Reduction of sugars is reported to have a good affect, especially with those more hyper-active. ADHD sufferers may see a benefit from dropping most sugars from their diets. If you don't want to drop right to artificial sweeteners, you could try dropping the heaviest sugar of them all; High Fructose Corn Syrup. Products with a lack of HFC are growing in the rosters of what stores are selling. To see how much HFC is in a product, check the ingredients. If it's one of the first three or four items, then it likely has plenty of HFC to go around (on top of all other natural sugars). There are reports that lower sugar intake can also decrease anxiety.

Caffeine is a subject for personal trial. It's been found to sometimes have an opposite effect on the more hyper-active, by calming them. Again, this doesn't work for everyone, but it is worth trying at the low cost of caffeine products on the market. You might avoid using soda as a caffeine source if you want to avoid HFC or other heavy sugars.

Corn starch, especially from corn directly, has been found to cause problems in some children with autism. It's an odd issue, but corn is a highly potent starch and it's removal has been found to help with some children.

None of these are perfect or a remedy for everyone. The thing about diets, much like finding working medications, is trial and error. Keep track of the things your child eats and note behavior changes that seem to be linked to when that food type is consumed. Most times, you really can't hurt anything by trying one of these diets. If there is a concern about allergies or a serious medical condition that affects diet, see your doctor for guidance.

For other tips, avoid fad diets, see a dietician (many are covered by insurance!), and keep proper vitamins in your child's diet. Especially keep vitamins D and B12 if at all possible. Diet can be a tricky thing with autism kids. Between sensory issues, allergies, and effects above, it can be a tough road. Never give up.

You may not find the cure for autism in diet, but you may find a more comfortable diet for your loved one. That's all that matters.

Sensory issues and autism, proprioception

If know anything about the five senses you will know of sight, smell, taste, touch and hearing. Those are the basics and what we know of on the surface. But how much are we really affected?

In autism, some senses are turned up too high and thus are too intense at times to endure. Others are turned down too low and may endanger the person affected. For example, pain sensory too low can affect reasoning on dangerous situations.

Before I get to that really cool word up there, let me touch on the basics for a recap of how they can affect us.

Sight: Sensitivity to lights (including flashing ones) and brightness are commonplace. Flashing lights or too many fast moving objects in the area can also cause too much stimulation. If something moves close to the face goes past fast it can cause flinching. Some may get stimulation they like. My son flies toys past his eyes all the time for "movie-like" effects close up. Too many moving objects like bodies in a crowd or a thousand tennis balls being dropped at once can cause the eyes to try and focus in several places as once. As you can imagine that doesn't work out well. It's a natural tendency of the autistic brain to lack filters for several or certain senses causing an intake overload.

Hearing: I've mentioned before how painful high pitched noises can be. I don't just mean aggravating with chills up the spine. I mean you may as well have plunged a fistfull of hypodermic needles into my ears. But this can go the other way too. Some of us like a sound so much that we'll over use it. Some kids like the sound of their own voice at various pitches and will make all sorts of cooing and varied noises just to hear themselves. Again, multiple noises can short circuit a person with too much stimulation. The ears and the sensory intake may lack the ability to sort multiple sounds at times.

Touch: I've seen few sensory stimulations work on autistics like the sense of touch. Textures and temperatures work together to either provide a calm or repellent effect. A heightened sense of touch can make something as menial as bumps on a wall an object of fascination. It can also make a seam in clothing completely unbearable.

Smell: Odors can thrill or gag a person. Too high of sensory can make even a pleasant smell impossible to tolerate. Too low and you may not realize your dinner is burning.

Taste: There are three senses that work in the mouth at once and they make taste what it is. Smell and touch work with taste for a multi-sensory experience. This makes for picky eaters and even eating disorders. As it is, digestion in the mouth changes the taste and textures of some foods and can affect just how much it's tolerated.

Now for how they all work with that word; proprioception. Our proprioceptive sense are how our body and other senses work with the work around us and out internal being. So we can break it down to two ways this works; internally and externally.

Internal examples would be the feeling of a full stomach, muscle cramps, the need to go to the bathroom, and anything else our internal organs need to tell us. Yes, those are part of our senses and they can be affected by autism. This is why something as simple as mild hunger can be totally intolerable to some autistics.

External examples are spatial. Spatial senses tell us where our arms and legs are as we move around. If those senses are not working properly, you get someone like me. I hit my arms, hands, knees and feet on doorways and walls. I overshoot when reaching for doorknobs and jam my fingers. Spatial sense is important. Your sense of balance also works into this and bridges the gap from internal to external.

You know that feeling you get when dropping through the air suddenly? That's a proprioceptive sense. Kids who enjoy that feeling may jump off of things a lot.

The feeling of having lots of pressure on your body from blankets (as many autistics seem to like with weighted blankets) is a proprioceptive sense.

This is why understanding of sensory can be such a distinct key to understanding your child or family member who as ASD at any degree. I've found that sensory response is usually the first thing to check when it comes to the behaviors or reactions of any person with autism. It's amazing to think how some things most take for granted can have such a profound (or lack of) effect.

I hope this gives you a deeper insight to sensory disorders.

Do you think?

So you're standing in line somewhere and feeling impatient. The line has been long and you're getting tired. Maybe someone ahead is working slow or someone else is getting confused. What ever the issue you know who it is and you have something to say:

"You disabled people should get out of the way and let a real person do the job." Or maybe you're more of this line of thought, "You disabled bums should get a job and get off my taxes." Either way, you consider them a waste of space and nothing but in your way. And that person heard you, and you wanted them to. They grit their teeth and shuffle on with what ever they were doing. They don't say anything back to you but someone certainly should.

Do you think?

Do you think, as a child, when the teacher asked them what they wanted to be that disabled was the first thing they said? Do you think they said it with a great big smile because they knew it would get in your way?

Do you think they enjoy not being able to do all the things they once enjoyed? Do you know them personally and know what made them that way?

Do you think that soldier who fought for freedom celebrated that shrapnel in his head? Do you think he feels like a success story as he now muddles through his day?

Do you think that guy in the wheelchair was hoping for a roadside bomb to amputate his legs? Do you think that anyone asks to be disabled when they say their bedtime prayers?

Do you think children with down syndrome and autism somehow planned it that way? Do you really think that person would rather be disabled than gainfully employed today?

Do you think they enjoy feeling worthless and unable to do normal things? Do you really think that being on the internet is the same as doing a full time job? Because, since they can move their fingers, that means they can be hired for anything. And who will you direct them to for this magical employment? Maybe it should be you.

Especially, do you think it really helps to hear the cold and callous words of someone like you who knows nothing of what they've been through? Do you think you're helping?

I didn't write this today because of anything recent that happened with me. I wrote it because of all the times I see scorn for the disabled and more for the fact that they want awareness. The truth of the matter is, if it weren't for the people who so flippantly throw their ideas out with callous disregard and lack of knowledge, there would be no need for awareness. If it weren't for people who think that the disabled should just rot in a room somewhere (like "you")there would be no need for the parades, walks and marathons.

So next time you see someone out for awareness with their flag held high. Remember when you scorn them, that you are the reason why.

Autistic self injury and seizures

People have a tendency to see self injury as the "victims own fault". I have heard this many times and it is in error in many cases. Self injury occurs for several reasons.

Some do it for a release of endorphins that can cancel out pain. Often these people are seriously depressed or suffering other mental conditions. The fact that they seek solace in self harm should not make it a matter of fault. They still need treatment and without it, will continue to self harm. It may not be as much of a "choice" as it looks.

In the autistic the lack of choice is especially true. Consider this paste from an article on Autism.com:

"Self-injurious behavior has also been associated with seizure activity in the frontal and temporal lobes (Gedye, 1989; Gedye, 1992). Behaviors often associated with seizure activity include: headbanging, slapping ears and/or head, hand-biting, chin hitting, scratching face or arms, and, in some cases, knee-to-face contact. Since this behavior is involuntary, some of these individuals seek some form of self-restraint (e.g., having their arms tied down). Seizures may begin, or are more noticeable, when the child reaches puberty, possibly due to hormonal changes in the body."

Mine started when I was six or seven years old. More to quote:

"Since seizure-induced, self-injurious behaviors are involuntary, one may not observe a relationship between the person's behavior and his/her environment. However, since stress can trigger a seizure, there may be a relationship between stressors in the environment and self-injury. This may include too much physical stimulation (e.g., lighting, noise) and/or social stimulation (e.g., reprimands, demands). Foods may also induce seizures (Rapp, 1991). If the behavior began or got worse during puberty, one may also consider the possibility of seizure activity. If seizures are suspected, it is recommended that the person have an EEG."

See the whole article HERE.

I am on medication that helps to keep my incidents in check. I am very careful to remove myself from stressful situations that may cause an incident and have a "cool down" area in my home for just such issues. I use a fan for cooling and a white noise effect. I rest until my system calms.

My son has suffered this as well. If upset enough, he will bite himself or head bang. It's important to intervene on this as much as you can and as soon as you can. Medications may be necessary.

The dangers of long term head banging and self injury are permanent damage to the brain, cranial nerves, or skin. Biting can cause blood exposure, bleeding, damage to hands and arms, and permanent scarring.

I have to say that head banging is probably the most dangerous because of brain injury possibilities. Not only that, but damage to cranial nerves alone can cause significant disability. If the person uses their fists for all those years they can permanently damage nerves in the hands and wrists from all the hitting as well.

I have permanent cranial nerve damage and I can't tell you how embarrassing it is to have to explain it to anyone. I do though, for the sake of education. I just wish, if they could have done anything for me in my child hood, that they could have helped me with that. They weren't diagnosing autism in my age range or geographic area for age range in my teen days. No one caught on.

So it's important that you catch on now, especially if your child is engaging in self damaging behavior. Find out why and get it treated. Don't let it disable them permanently.

Autistic children and idle hands

Recently, this weekend, my son got up and took very good care of himself without waking us. He got dressed, made himself a toaster waffle (with peanut butter), and then played in his room until we woke up. We thought it was a very "big boy" way of handling himself and we told him so. Just to be clear, my son can wake up very early; far earlier than anyone wants to get up on a weekend. Six A.M. anyone?

We had a great day as well and felt very good about the grown up things he did. The feeling took a nose dive the very next day (this morning).

First, let me take you back to his toddler days. In those days, we had to be very sure we got up before he did or our home would be ransacked. Everything would be pulled out of the refrigerator and dumped on the kitchen floor. Yes EVERYTHING. If he could get to flour and sugar (and the little master climber definitely could) it would join the contents of the fridge. If his pull up/diaper had any contents he would smear them on the walls. We would find him nude and often in the midst of any mess. He would also set our caged pets free (rats at the time). We've found him in many interesting places. Sitting in the rats aquarium or on top of the fridge were just a couple of the more surprising ones. Toddlers will do these things if they are exploring on their own, but it takes an autistic toddler to defy reason or science. When was the last time you found your 2 and half year old on top of your six foot fridge? I rest my case.

Today, we see lapses that seem to take him back to the decisions of his toddler days. No smearing, thank heavens, but bad choices for a 9 year old. Today he decided to sneak desserts for breakfast. Yeah, that's normal kid stuff really. It's when he decided to saw marks on the kitchen cabinets with a steak knife that pinched it for us. This prompted a long talk about knives and what he already knew about them. He did, in his toddler days, play with a knife and cut holes in our bed sheets. I've taught him all about how to stay away from sharp knives and how they are to be respected.

And how did we find out about all this? He gives himself away, believing he will be caught, he spills the beans. He says, "oh I hate myself for what I did" but we don't allow that either.

I know this morning wasn't anywhere near as bad as his toddler days. What I'm looking at (and discussed with him) is the fact that he needs extra supervision and we can't allow ourselves to forget that. I want him to be the big boy who can make his own breakfast, but maybe he's not totally ready for that. I know this is a common point for our spectrum kids. They're just behind a ways really. I look forward to seeing him catch up.