Separating Autism from Autistics

Many people believe that you cannot separate autism from autistic people.  They say it no different than gender or race.  Last time I checked, it was still possible to get a sex change operation and Michael Jackson sure tried to change his race.

To me autism and autistic people are very different things.  To me autism is no different than any other neurological disorder.  In many ways, I think autism is a lot like bipolar.  There are some real perks to bipolar for some.  A lot can be accomplished in a manic episode.  But there are some serious minuses as well.  People with bipolar are at a greater risk of suicide.

So I decided to go to the autism expert in my house and I had the following conversation with Joe last week.

Mom: "So, Joe, if someone would come up to you and say 'I really hate autism.' would you think this meant they hated you or some of the things that autism makes you do?"

Joe (AKA Mr. Literal):  "If they said they hated autism, I would think they didn't like some of the things about autism.  Like my friend, Harris -- sometimes he can really annoy me but I still like being friends with him.  And Alan is OK as a brother but it sure would be nice if he could talk like me."

That made a lot of sense to me.

I read a blog awhile back where the mother said that her child was autism and autism was her child.  All I could think was how sad and limiting that is. 

I think my boyz are so much more than their autism.  While some of their personality traits have probably developed in response to having grown up with autism, some are just there.  Alan can't begin to tell a joke, but he has the funniest sense of humor.  Joe genuinely wants to be helpful.  Alan cleans up all the time and has since he was a toddler.  Joe is wise beyond his years but so unbelievably naive.  They are some weird little conundrums!!

When someone says you cannot separate autism from autistics, I want to say that is like saying you cannot separate red from the rainbow.  You can.  Maybe it makes the rainbow less pretty, but then again, if you have too much red it can overwhelm the other colors and make them much harder to see. 

I just want a little better balance in my rainbows.

Not even a small pebble ...

They say people in glass houses shouldn't throw stones, but right now so many of them are still chucking boulders around it isn't funny.

Just a few short days ago, a fellow Autism parent snapped.  Was it right?  Hell no.  Could it happen again?  Most likely.  To me?  God, I hope not.  To someone else I know?  Maybe.

There are so many questions and so many possibilities to our lives and those of our children and yet so many people (especially special needs parents) are still so trapped.  When Alex's mother stabbed him repeatedly earlier this year, so many people were so quick to condemn her.  How can any mother kill her child?  Others tried to be understanding.  She was just dealing with so much.  In turn, these people were vilified by the autism community.  There is no excuse for killing your child. 

No excuse perhaps, but sometimes people snap.

The statement has been made over and over again, "God never gives you more than you can handle."  I happen to disagree with this immensely.  Mental illness throws everything out the window.

If a typical teenaged star athlete commits suicide, does everyone instantly label the parent as bad?  Maybe.  But most likely there was some mental illness that caused the child to lose hope and lose the will to live.  If a mother (or father) of a typical child kills him/her there is instant horror and outrage.  How could he/she be so selfish?  But when a parent arranges a murder-suicide the first assumption is usually (I would hope) "what brought them to this point?"  After all when you try to take your own life as well it isn't so much selfishness as despair.

So many people have never dealt with the intense violence that was a part of Kelli and Issy's life.  Many have never dealt with the crushing choices facing them.  How about living 2.5 hours away from your home and the rest of your family in order to have your child go to the best school?  I am willing to bet not many people could take that one on the chin and keep going as though nothing happened.


Autistic people will say that if you try to justify a crime like this you diminish an adult autistic's life.  I think it is safe to say that Issy's life (and Alex's) were already diminished.  Does that make it right?  Hell no.  Does that make it sad?  Immeasurably.

So before all the haters out there jump on me for excusing or justifying this crime, let me be clear.  I AM NOT!  I am trying to understand.  I just want to keep this from ever happening again.  I wish I had answers.

Maybe this hit me especially hard because both these children were 14 and my Alan just turned 15. 

All I know is I'm not throwing any stones at Kelli ... not even a small pebble.

Truth in Advertising

I got Alan his first Autism t-shirt when he was pretty little.  We were going on vacation and I wanted a shirt for him to wear when we were in unfamiliar territory that identified him as having autism so that people could understand why he was acting the way he was acting! 

We were so happy with people's reactions, that we came home and ordered 3 or 4 more.  We've added several a couple times of year since then and prefer to dress him in them on the weekends.  We just got a new batch last week and I can't figure out my favorite.  I love them all!



Sometimes they just say "Autism Awareness" and sometimes they are more humorous.  Over the years we have had:

• I have autism and I am a good boy.  My mom and dad are doing the best they can.  Friendly smiles are appreciated, parenting advice is NOT.
• Why be normal?
• I'm not a brat, my genes just don't fit.
• I have autism.  Thanks for being patient with me.
• Autism:  Seeing the world from a different angle.
• Staring at me will not cure my autism.
• Just because I can't talk doesn't mean I don't understand.
• I have autism.  Please be nice to my mom.
• Warning:  Autism meltdown probability high.
• I'm not rude, hyper or spoiled.  I'm autistic.
• Stare if you must.  I'm ignoring you anyway.
• Eye contact is overrated.
• I have autism and I'm ignoring you.
• Autism:  Being different can be a good thing.
• I have autism and I think you are weird, too.

But my all time favorite is:

• Keep staring and it might cure my autism.  Then we can work on YOUR social skills.

Thank goodness for a sense of humor!

Night and Day

My boyz are as different as night and day.  We've all heard the expression ad nauseum "If you've met one person with autism, you've met one person with autism." but even the most jaded person in the world would think that two boyz from the same gene pool, raised in the same environment with the same diagnosis would have more things in common than not in common.

I'm here to provide evidence to the contrary.

Both my boys have communication problems.  Joe didn't talk at all until he was almost 3 and then started spouting words and phrases from books at a phenomenal pace although comprehension is still an issue at 18.  Alan, on the other hand, seemed to develop typically until he was about 2 and then rapidly regressed and seemed to stagnate.  Grrrrr  Just when you think you have this autism figured out, the second one is completely different from the first. 

What was difficult for Joe (potty training) happened almost overnight with Alan.

What worked so well for Joe (ABA) had almost no effect on Alan -- he just ritualized things. 

Alan goes barefoot every chance he gets (even in this picture from last December when there is still ice in the raingauge) but Joe puts on his sandals every time he needs to step on the grass because of his sensitivity issues.

Joe always has something in his hands in his toddler pictures (usually several somethings) but Alan always wanted his hands free to climb.

Joe has always been sound sensitive.  He hated fire alarms at school, he used to wear noise muffling headphones for watching fireworks (and we weren't that close) and he still wears them for cutting the grass.  Alan likes making the most piercing noises known to man but doesn't seem to care what sort of noises are in the environment.

Even for things that they both loved (their wooden toy trains) they played completely differently.  Joe would carry around a handful most of the time but when he played trains, it was to run them along the track stimming out of the corner of his eye.  Alan likes to make very long continuous trains and crash them off a high surface.

Joe is unbelievably gentle for a boy.  He doesn't like violence and has only lashed out physically a handful of times.  Alan came out of the crib headbutting.  I have a very vivid memory of telling him no about something when he was barely walking and him turning around and headbutting Joe in the back.


They both love swimming, but Alan loves the ocean and waves and Joe is skittish of critters and prefers swimming pools and his mask.

Joe used echolalia and scripting to start talking.  He would take a phrase he had heard in a book or a movie and apply it to a different situation to come up with an expression that was most times appropriate.  Alan just scripts for the stim.

Alan is a complete daredevil and climbs to the top of everything while Joe is a little bit scared of heights.

Alan has been known to elope on more than one occasion (going so far as to attempt to walk to his aunt's house 5 miles away), but Joe just leaves the situation and then comes back when he has calmed down.

Joe is a complete pack rat while Alan loves to "clean up" and has thrown out numerous things we then had to fetch out of the trash including silverware and unwanted toys.

Joe has always loved crafts of all sorts, but paper/pencil activities are torture for Alan.

Joe always slept like the dead but Alan had a more difficult time falling asleep and tended to wake up at first light.  This has improved since he has become a teenager but he is still our usual weekend alarm clock.  Trust me, it is impossible to sleep through a 160 lb. kid back flipping out of bed on the floor above you!

Alan is very motivated by "task completion".  At school, they frequently use finishing a job as the reward for doing the job itself.  We joke that this is the reason Alan gets in the ocean and starts swimming for the horizon -- he has to get to the other side!  Joe on the other hand, loves to start projects ("I am going to type all the numbers from 1 to 1,000,000.") and a few days later he loses his motivation. 

So for those people out there that do not like the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) changes to the definition of autism, I would like to point out that I think in many ways this will be more accurate.  Under the DSM-IV, both my boyz are "PDD-NOS".  This does not even begin to cover their complex differences.  At least with DSM-5 they will be level 1 (Joe) and level 3 (Alan).

Rob Growski of Lost and Tired said, "The most dangerous mistake in Autism is generalization."  He's got that right!

The Debate

Sometimes I feel like I have both sides of a debate team in my head.  Lest you think I am schizophrenic (which is a possibility says team B) I will explain what I mean.

Team A:  Life is so much tougher when you have autistic kids.  There are endless meetings with schools, teachers, doctors and therapists.
Team B: Have you talked to your friends with typical kids?  How many games, practices and club meetings do they have in average week?
Team A: 1   Team B: 1

Team A:  When I take my child to the pool, they never play with the other kids.
Team B:  Have you seen how annoying other kids can be?  Are you really sad that they aren't playing with those jerks?
Team A: 1   Team B: 2

Team A:  Every time I tell someone my child has autism, they look at me with pity.
Team B:  If it wasn't important why did you bring it up?
Team A: 2   Team B: 3


Team A:  What is my 18 year old going to do now that he has graduated?  He doesn't have a job and he isn't ready to go away to college.
Team B:  Look at all these parents whose 18 year old kids are going to college.  Do you think any of them are "ready"?  Do you remember how much trouble you got into at 18?  Maybe it isn't so bad having him still at home.
Team A: 2   Team B: 4

Team A:  We still have to get a babysitter respite provider every time we want to go out for a date and we have two teenagers.
Team B:  Would you want to leave two "typical" teenage boys alone in a house when you go out?  How many girls could they get pregnant and how much liquor could they consume?
Team A: 2   Team B: 5

Team A:  My kids are rarely invited to birthday parties and they've never been on a sleepover.
Team B:  Think of all the money you haven't had to spend on other kids' birthday gifts, all the time and money that you haven't had to spend planning parties and all the useless things you haven't been given at your own kids' parties.  You also haven't had to host any other kids.
Team A: 2   Team B: 6

Team A:  Everyone has a story about someone they know who was "cured" by doing something (usually bizarre).
Team B:  Yep, they do.
Team A: 3   Team B: 6

Team A:  My boys do not interact with each other very much.
Team B:  You've heard stories from the hubby about how teenage boys "interact" -- is it really so bad that older one isn't giving the neighbor hints on the best way to beat up his little brother?
Team A: 3   Team B: 7

Team A:  We aren't able to go to many family celebrations because of Alan climbing on things and getting into trouble.
Team B:  And haven't you also used that as an excuse to get out of things you didn't want to do?
Team A: 3   Team B: 8

Team A:  We haven't taken Alan to church since he was 3 and therefore have to go to two separate services every weekend.
Team B:  OK, that is a pain in the butt no two ways about it.
Team A: 4   Team B: 8

Team A:  There is so much conflict in the autism world.  The vaccination debate, the GF/CF folks, acceptance vs. awareness, is Autism Speaks the anti-Christ, should we call them people with autism or autistics ... I can go on and on.
Team B:  Parenting debates exist everywhere.  Do you have to defend whether or not you breastfed, let your child sleep in your bed or made him cry it out, did attachment parenting, or have ever spanked?
Team A:  Autism parents don't care about little things like that.
Team A: 4   Team B: 9

Hmm, maybe I'll keep my strange little family and our bizarre life.  After all, it could be worse.  I could have two typical kids.

Which Came First?

Many people have said to me over the years "Oh you must be a special mom to have been given these special children."  I am sure they mean it as a compliment, but nothing grates on me more.  I internalize that comment to mean "You must have been a person that deserved these kids."  Doesn't sound nearly so complimentary, does it?

I think sometimes people say this to comfort themselves.  They can think "I'm nothing special so I can't possibly deal with those kind of special problems."  Which in turn means nothing bad can possibly happen to them.  The only problem is, most of us felt that way at one time or another.

I truly believe I became a better mom because of Joe but I think Alan was sort of the straw that broke the proverbial camel's back.  Joe had just been diagnosed when we got pregnant with Alan.  Of course in those days, they were still tossing around numbers like 1 in 5000 and there was no known (or at least reported) genetic link so we actually thought that Alan would be our typical child.  Wow.  Were we wrong.

The boys have helped me grow as a person.  I am stronger, more outspoken and way more confident than I was pre-kids.  I also have a better marriage.  I also am more resentful.  I feel like we were short changed in the kid department.  Most people I know have at least one kid that is typical and it seems like they are all gifted.  (I know they aren't really, but most people brag about the good things they do and gloss over the "issues" that cause problems.)  It just never occurred to DH and I that we would have not one, but two children with learning difficulties. 

There is a wonderful photo story that a friend shared called The House Autism Built.  I especially love page 6.  The mother is quoted as saying “The plain honest truth is that the plain everyday run of the mill common person is given a child with special needs.  At the end of the day children with autism are not given to strong special people, we are made strong and we are made special by having to raise that child with special needs and, yes, we are very often given more than we can handle.”

In my opinion, that sums it up.  We are strong because of our children.  We were not anything special before they came along.  It can happen to anyone! 

Autism and Violence

I have debated over and over in my mind what if anything I should say about Sandy Hook. The idea that the gunman might have had autism is a scary thing.  While Alan can occasionally be violent, it isn't a calculated kind of violent.  Joe, on the other hand, could perceivably have be able to plan out something like that, but I know he wouldn't and here is a story that shows why.

Saturday we were talking about what we should do to get into the Christmas spirit and we  discussed watching a Christmas movie.  While Joe will watch any of the Santa Clause movies or The Polar Express by himself, the "classics" he only watch when we are watching them.  DH and I were going to put on It's a Wonderful Life and Joe asked if he had ever seen it.  I told him that he watched part of it one year with us, but seemed to grow bored (probably too subtle) but he still expressed curiosity and asked what it was about.  I told him it was the story of a man who was having a very bad day near Christmas and contemplated suicide but an angel comes down and shows him all the good things about his life.

Joe's response?

"He committed suicide?!?"

Me:  "No, he just thought about it and the angel came to show him how wonderful his life really was and all the reasons he had to live."

Joe:  "So the angel saved him?"

Me:  "Yes.  It is really a happy movie in the end because it shows how wonderful the man's life really had been."

Joe:  "OK, but suicide is just so final!  Can we watch A Christmas Story instead?"

Ah, my gentle giant.  Although my son towers over me in height and outweighs me by 50 pounds, he is such a gentle kid and I am so grateful.  That said there are so many parents that have to deal with the horrific aspects of mental illness.  This article (I am Adam Lanza's Mother) shows the "other side."  Thank you Lord that I only have to explain things to Joe over and over.