Awareness and understanding for the Autism community. We need it, we want it. The right thing to do would be to give it to us.
However just because you want something doesn’t mean you deserve it.
It makes me so upset when I hear how those of us with Autism ‘deserve’ everything from Heart Transplants to jobs and housing.
This is not true. We don’t ‘deserve’ anything.
Before you get upset and start calling me names, finish reading please…
If you are robbed you deserve compensation. If you are raped you deserve justice. If you are lied to you deserve the truth. If you work for someone you deserve to be paid.
You only ‘deserve’ something if you are a victim or if you earned it!!
We need to change our message. We need to push for awareness without making ourselves out to be victims. Nothing is owed to us just because we work a little different than others.
When we play this victim card, we belittle ourselves. We paint ourselves as poor little victims. If we are victims then we are to be shown pity. And if we need pity then we are less than whole, less than perfect…broken in some way. Do we really need or want a pity party from the world?
Please don’t get me wrong. My son has an IEP and he gets help in the classroom. Not because he deserves it. No, because we made the school AWARE. Dose this help my son? Yes. Does he rank above other kids because he deserves this help in school? No!
What are we teaching the very world we want to make aware, once we start being the victims? Are we teaching them we can work and hold jobs? Are we teaching them we are worthy of love and respect? I don’t think so.
Would we like understanding and awareness? Yes. Is it owed to us..? Not at all.
We spend so much time and energy promoting awareness to the world about Autism.
This is one of my (many) issues with groups like Autism Speaks. They spend so much time painting Autism as a victimization rather than as uniquely different. I won’t even go into the ways they victimized the families of Autistic people. Painting such a tragic picture of those poor families having to deal with Autism. Whatever…
Maybe we need to spend a little time promoting awareness about our OWN actions and words.
The following was posted on twitter by @GiftsofAutism
“What if the awakening of autism required a critical mass of the world embracing us as God’s Great Gift to them? What might happen if the seal of disapproval on autism was removed? What might happen if for just one day, we could exist in an energy field devoid of negativity, hatred, and anger against the very form of our being?Better yet what might happen if we were treated with great respect and honored as future teachers in the making? What if people started to actively support this process of freedom? Not freedom from our autism, but freedom from the negative thoughts and feelings projected toward autism and those of us who wear this label? What if being a person in autism was seen as exceptional, unique, a person capable of great wisdom and healing powers?”What if??…..Imagine
What IF we saw ourselves the way we wish NT’s would see us…?
Do we want to see ourselves as victims?
We are not victims. We haven’t been wronged. And the world doesn’t owe us anything.
We owe it to ourselves to show the world that we are NOT victims.
As Aspies we need two things. Comfort and Security.
We live in a confusing world dominated by NT’s. A world full of questions and uncertainty. We live in a mean world, we are often judged by the ignorant. It is a world that overwhelms our senses.
Because of this we need two things that we can always count on: Comfort and Security. And these only come from understanding.
With my son, his mother is his comfort and I am his security. She understands his need be comforted. She has infinite patience with him. She is forgiving of his melt downs. She is unconditional love. He can be at peace with her.
I am his security. With me he knows he is safe. He is safe to be himself. He is safe from harm. And he is safe from himself. Yes I am the disciplinarian. I punish bad behavior. And he is safe knowing that I do these things out of deep love for him. I never lie to him. He knows my word is something he can always trust. (note: I am not implying his mother does lie to him).
When night falls, he needs both Comfort and Security.
Now because of our two different roles, our son doesn’t respond to his mothers attempt at discipline. He just gets worse, yelling throwing things, melting down. Until I enter the room. Then the safety of structure and firmness kick in. I normally only have to say ‘stop behaving like this’ and he calms down. I explain it is OK to be upset but is not ok to be mean to people. Always a consistent message. He is safe knowing his melt down can be controlled rather than controlling.
However I am not his comfort. Let me cook his dinner and he won’t like it. Let me try to put a band-aide on his boo boo and he keeps crying until mom arrives. We each have our own roles in his world.
Once you understand these roles with an Aspie child, it becomes almost easy. (I said almost).
What about Aspie adults? If you are going to have a successful relationship with an Aspie, you have to find that balance between Comfort and Security.
The old joke that a man marrys someone like his mother comes to mind. Except and Aspie marrys someone like a mother and a father.
We need a comforter. Someone to love us without judgments. Someone to take care of us a little. Remember Aspies SHOW love more than saying I love you. So we need to SEE love.
We need security as well. I don’t mean someone to beat up bad guys. I mean someone we can trust 100%. Someone who can tell us when we mess up, but tells us with love. We need security of honestly.
As a parent or a partner, if you love an Aspie you have to offer Comfort and Security.
I was asked one day, “if you see everything so black and white, how can you believe in God?” My answer dumbfounded the inquiring person : I said “because everything IS black and white, how could I NOT believe in God?”
Yes I live in a literal world. No doubt that I do not work in subtleties. So I can understand asking how can I have faith. Isn’t faith believing in something you can’t see?
Let me insert my honest disclaimer here before we begin. I am not one of those self-righteous people who thinks I am better than everyone just because of my faith. I am actually quite the sinner. I can cuss a sailor out of the room, I smoke, I am FAR from perfect. This post isn’t about how you should save your souls (although I hope you do!) It is about the perceived conflicts between having Aspergers and having faith in Jesus Christ.
Being an Aspie, there is a down side to my faith; I don’t communicate my emotions well. You won’t find me jumping up and down screaming Praise God and Amen in church. That used to bother me. I just couldn’t be like that. Did that make me less o a Christian? Now I am comfortable with how God made me. Now I know how my Aspergers works. So its no big deal to me.
My faith in Jesus has always been easy because I CAN see things logically. I think it is my logical brain that helps me see better than most NT’s. When I see payers get answered I don’t try to second guess if it was really an answered prayer or coincidence. I watch NT’s do that a lot.
As an Aspie, there are questions that can only be answered with God. Watch a baby come into this world. A billion things had to happen to get to the point of birth. How can something that complex happen by accident?
I love when people argue the Big Bang theory. They can be so passionate about their believe of the creation of the universe. For the record I believe in the Big Bang as well. However they can’t explain what made the Big Bang happen. I can; God.
Evolution? What about dinosaurs? I say what about them? Noah didn’t bring any on the ark. Duh (sic).
Then people go after the big question: ‘where did God come from?’ I like to pick this apart. The people who ask that question are the same ones who love science fiction stories of space and worm holes and time travel, but refuse to admit that God is not bound by time as we understand it.
To my Aspie Brian, that is the only logical answer.
There is so much LOGIC to God. Let me give a few examples-
If the dinosaurs didn’t die we would not have oil. Logical.
The intricate process of the food chain. That delicate balance can’t mathematically happen by chance.
There is almost a mathematical formula to everything. Even to following the bible. When I gladly pay my tithe, I have no money troubles. When I don’t pay my tithe thus keeping that extra money, it seems I always have money trouble.
So logically looking at the odds, the bible is right.
What is faith if it isn’t hope?
As an Aspie, I take comfort in my faith. I have hope for a future and my place in this life. I hear some Aspies saying they don’t fit in. Why me? Whine and cry… I never really feel that way. God gave me gifts. I have this gift to see things clearly. I tend to be smarter than most people. I don’t panic. And most importantly I have hope; I know I have a purpose to my life.
I am so thankful for all that I am! Thankful for all that I have. Thankful for hope. Life as an Aspie is awesome.
If you can say the universe is just one big accident, then you can say that I am just an accident. And if I am nothing more than an accident, I serve no purpose. In the words of Spock “illogical”.
Then there are my personal selfish reasons for my faith. I like to feel loved and accepted. Who doesn’t? Yes, we Aspies spend most of our life being judged and misunderstood by NT’s. Yet I am never judged by my ‘church friends’ they always accept me for who I am. We don’t always agree, but I am always accepted. I love that feeling of acceptance and I always have.
If you are the parent of an Aspie child, consider ways to give him or her that hope and acceptance.
The question isn’t How can I have faith? The question is How can I not?!?
How many times has my kid been called a spoiled brat when he melts down? How many times have I been treated with contempt for my melt downs? The irony is that many of my melt downs are caused by the very people who judge me for having a Melt Down.
I can’t explain a Melt Down without first explaining what causes them. There are three triggers; emotions, sensory over load and frustration.
People with Aspergers have very intense emotions. We just struggle to get those emotions out. So when we become overwhelmed with any emotion; love, hate, anger, it builds inside like a tea kettle. We try to articulate those feeling and we can’t. Then frustration builds and the steam needs to escape. Ok a tea kettle is a bad example, think pressure cooker instead.
Another trigger for a Melt Down is sensory over load. We Aspies all have one or more overly active sense. For me it is sound and vision. A lot of movement in a room makes me have dizzy spells. Driving past a line of orange barrels on the highway makes me intensely agitated. I grip the wheel, get tunnel vision, breath heavy as my heart pounds. I am also sensitive to sounds. Someone sneezes and I will launch 10 feet in the air. Multiple people talking at once makes me want to run from a room. It is so overwhelming.
Then there is frustration. Frustration from not being able to get feelings out. Frustration from being trapped in an overwhelming sensory over load. Or maybe frustration from a lack of fine motor skills. Want to see me melt down? Make me put line back on the weed eater or ask me to build a model.
Then there is the frustration over right and wrong. Aspie have a deep sense of right and wrong. When you’re doing something I perceive as wrong it drives me nuts. I get frustrated watching it. I’m at a loose for words… Frustrating.
An important note here: children do not have a developed sense of right and wrong. So to a child Aspie it may be very wrong in his eyes if you forced him to go shopping (sensory over load) and you don’t buy him a toy. Please set those expectations BEFORE you leave for the store with the child.
The frustration screams for peace. The pressure cooker needs to let off steam. It doesn’t want to explode. It would rather just escape the heat.
It is much like the reaction an NT would have running out of a burning building. Panic, fear, pain, anxiety! Now imagine trying to escape that fire and people are blocking your path. Not letting you escape. Mocking you for trying to get out!! You would go into a type of rage. Not because you hate them but because you hate not being able to escape.
These things hurt! I can’t deal with the whirl-wind! MAKE IT STOP! MELT DOWN COMING!!
The melt down itself is almost surreal. I won’t say we are out of control. There is always a line we would never cross. I would never physically hurt someone. Although in my youth I directed all that steam into hitting walls, trees, cars…We don’t even want to melt down. There is this voice screaming ‘I DON’T WANT TO DO THIS!’ You try so hard not to say something you will regret. For me it is cursing. I don’t like to sound like that, but sometimes no other words work during a melt down. For my son it is the word ‘hate’. He hates me, hates his mother etc. In truth he is a very loving child. And he always feels so terrible after a melt down For saying those things. It breaks my heart.
Then there is the aftermath. The exhaustion. The shame and guilt. The feeling of judgment. The resentment of those who caused the melt down.
And the fear. Melt downs scare us. It is that same fear of escaping that burning building.
There is a plus side to seeing a melt down. Most Aspie won’t melt down in front of people they don’t trust. So if you are with an Aspie and he gets to that point, take comfort in knowing you are in his inner circle.
Are we the spoiled brats and selfish jerks that NT’s judge us to be…? Think about that the next time you get angry at you Aspie child for embarrassing you by melting down in public. (yes I meant that to point out your selfishness).
I will however say this; melt downs can’t go unchecked in children. No one is stricter on my young Aspie about his melt downs than I am. I help him understand them and understand how to avoid them. But I do not let him accept unacceptable behaviour. He must learn that he cannot say he hates people. He cannot throw his toys. At the same time he has to learn to avoid burning buildings altogether, thus avoiding the melt downs.
There are many times I KNOW I need to walk away and breath. That takes discipline and maturity. It isn’t easy to slow down and walk out of a burning building.
What is it about nature that makes so many with ASD a little calmer and more at ease?
I have noticed a fundamental change in my 8 year old Aspie over the past few weeks. We have been spending every weekend helping a friend take care of 60 acres, and my Aspie is a new boy.
He always protests going and breaking the routine. No TV or computers out there. So he gets upset as it is time to go. He fuses the entire 2 hour drive.
Then we get there. And this boy who spends all day inside with the TV and video games and computers is now covering all 60 acres. He becomes a fearless explorer. Searching out all the animals and oblivious the dangers of snakes and bears.
He has a self confidence about him. And he has no melt downs (unless his brother picks on him).
So what is it about the woods and the lakes and the mountain that affects my little Aspie? Is it the quiet and solitude of the mountain? If it the lack of sensory overload? Is it a connection with God and nature? Or is it the confidence he finds as he explores?
I think it is all of the above. He is at peace in the quietness of nature. There are just the soothing sounds of water and birds and wind. He is building his confidence as he explores. He is finding a fellowship with the land and he is discovering the awe of Gods wonder. A sense of something bigger than himself. In fact my otherwise shy and quiet Aspie shot his hand up at dinner and asked to say grace.
Where does all this lead me? Maybe we need to get all of our Aspie kids in nature more.
Maybe we just need to empower them to be a bit more independent.
Maybe we need to encourage them to look for God and help them learn that there is an order to life. Something bigger than them is in control. (this last point is always a good idea, but that is for another post).
All I know is this. He is growing a lot in those woods. And I plan to give him every chance he needs to keep growing.
It is time I go after the elephant in the room.
Everyone one has heard of this organization. They run advertising on TV radio and magazines. Heck I even saw their big display of blue light bulbs in Home Depot.
So if they are such a great big organization doesn’t that make them great? In a word; NO.
Most people who give to Autism Speaks have no idea how offensive and demeaning this organization is to Autistic people.
I do not know a single person on the Autism Spectrum who supports Autism Speaks. I don’t even know a single person on the spectrum who doesn’t hate Autism Speaks. Why? Several reasons:
Autism Speaks does not advocate for Autistic people. Rather they demonize us. They paint us as sick outsiders who need to be cured. They label us as not normal. They openly promote aborting babies who MAY have Autism.
We aren’t sick. We aren’t broken. All we ever want is a little understanding. Yes we are different, not broken. Autism is a part of who we are, how we think, how we live. To ‘cure’ us would be like cutting off your leg because the doesn’t like the smell of your feet.
Look up their video ‘Autism every day’. In this Public Service Announcement they show a woman, speaking in front of her Autistic daughter about how she contemplates Murder Suicide because her child had Autism. She said the ONLY reason she wouldn’t do this was be use of her NON Autistic child. Who was the woman in the ad? The vice president of Autism Speaks.
Think on that for a moment…
Sadly not long after this PSA aired, a woman did just that.
Autism Speaks doesn’t advocate for Autistic people. They advocate for people inconvenienced by Autistic people.
Autism Speaks does not use its money to help Autistic people or their families. They instead spend their money on researching for a cure. (again I say, we aren’t sick).
By spending money on research, they are unaccountable for results. That is the nature of research after all. Yet they continue to host Hollywood fund-raisers and court corporate partners to bring in massive money. Not directing that money to the people they claim to advocate for.
As I said I have High Functioning Autism and as such I have a strong sense of fairness. So let’s be fair here. In 2010 Autism Speaks DID donate $50 Thousand dollars to family and community grants. They also paid their top executives more than twice that amount and they donated $16 MILLION DOLLARS to research for a cure.
Autism Speaks does not and will not allow anyone on the Autism Spectrum in any controlling position in their organization. Sure they will hire parents of Autistic kids. But they won’t hire anyone even with high functioning Autism such as myself. There is a big difference in having Autism and dealing with Autism. And Autism Speaks only hires those who put up with Autism to run their organization. Those who want a cure, not for their children but to make THEIR life better.
Yes after years of pressure they did allow one Autistic person on the 29 member advisory board. Again I like to be fair.
Autism Speaks has money and Power. The couple who founded Autism Speaks are wealthy and they started with a $25 Million dollar do action from a friend. And as such they dominate ‘Autism awareness industry’. Ask anyone to name 2 organizations that you can donate money to for Autism. They won’t be able to. They can only name Autism Speaks. Why? Because Autism Speaks spends massive amounts of money in order to gain notoriety and market share. Yes they are a money making business just like Pepsi Cola. Difference is Pepsi is honest about why they advertise; to make money.
So now all those well meaning people who want to help Autistic families wind up giving money to the very organization out to destroy Autistic people.
All of this happens while true charities who would help Autistic people are starving for money.
Autism is not a disease, any attempts to ‘cure’ someone of an Autism spectrum condition, or any attempts to force ‘behavior modifications’ are wrong and immoral.
The vast majority of people on the Autism Spectrum are able to live productive lives. Yes some may need a little help. Please do not think you are helping any of us by giving money to a for profit organization like Autism Speaks.
Autism Speaks doesn’t speak for Autistic people.