World According to Matt

World According to Matt

Where the Mysteries of Autism are Revealed One Story at a Time

World Autism Awareness Day

On April 2, Autism Speaks, the world's largest autism science and advocacy organization, will mark the annual celebration of World Autism Awareness Day – a global effort to heighten awareness about a disorder affecting millions of individuals and families around the world – with a series of high profile awareness events and initiatives. World Autism Awareness Day (WAAD) was established by a resolution passed unanimously by the United Nations General Assembly in 2007, making autism one of only three health issues to be recognized by the UN with its own “day.”

World Autism Awareness day - 2015

April is Autism awareness Month - Can we please stop stimming?  (the Word - not the Behavior).

Stimming?  Seriously? Oh Please!

Autism awareness for me means doing what I can to dispel the myths and inaccuracies of what is and isn’t autism.  This year I would like to talk about stimming – it’s a derogatory, inaccurate term and I would like to see it melt into the past, like institutionalizing autistic children.

It’s called “Stimming” – short for self-stimulatory behavior – and it’s an all-encompassing term for the seemingly odd behaviors seen in early childhood autism, like the flapping of hands. Who am I to want to demand a change in medical terminology?  I’m one of the first autism moms - from before the surge in prevalence.  My son, Matt, and I have been doing this for a long time and in my opinion the term is highly inaccurate.  I see no “self-stimulating” behavior, and the words themselves feel derogatory, as if my child was unable to feel anything and had to flap to simply stay awake.

My son was diagnosed with regressive childhood autism in 1988.  The severity of his disorder was brought home by the recommendation by an entire team of specialists to institutionalize him – he was only 2 years old.  I went against that recommendation and brought my moderate –to-severely autistic, and mostly non-verbal, son home instead. We learned about autism the old fashion way – by observation, trial and error.  We have navigated the choppy waters of autism, and pushed the boundaries of what experts thought autism was, for Matt’s entire life.  Years ago when the term, “stimming” entered the conversation on autism I thought my head would explode.   Seriously?  People really think they need to self-stimulate?

Think about it a moment…. A child who is bombarded by huge amounts of environmental stimulation coming at them from lights, sounds, textures, tastes, etc., does not need to self-stimulate to “feel” anything.  They already feel way more than the neurotypical child.  It’s another one of those phrases that begs the question, “Who came up with this stuff?”

For Matt, the behavior made itself known through his hands - a twisting of his hands at the wrist – back and forth, back and forth, and flapping on occasion, just to mix things up a bit.  So, while he didn’t actually flap his hands constantly, he did move them constantly. The term didn’t exist for this type of behavior – but the doctors and therapists at the hospital where he was diagnosed certainly had an opinion about it – I was to stop him from doing it.  Grab his hands and hold them still.   And like a good little drone, I did – for about 2 weeks.

Within those 2 weeks I was observing my son, watching and learning and wondering why he would “self-stimulate”.  I came to the conclusion that it was emotional communication trying to be released from little boy who had trouble getting his emotions out.  When he was excited, those hands were turning quickly – almost a blur.  When he was content they moved in a slow, methodical rhythm that denoted calm. When he was anxious – they flapped. 

Communicating emotion is much more difficult then say, wanting a drink of water.  Wanting a drink he could point to the glass or to the faucet or to the refrigerator.  Wanting to tell me he was joyful and excited?  Hmmm….. Nothing to point at.  His emotions were in his hands.  Communication was in their movement.  Do I really want to grab his hands and make him stop?

To be fair, I am only an expert on Matt – not autism.  I couldn’t tell you about other autistic children. I was only able to read Matt’s behavior and observe the link to his emotions.  Actually, there were no other autistic children around at the time – Matt had a rare 1:10,000 communication disorder called autism, and no one had ever heard of it.  There was no Internet – no one to share notes with or compare behaviors with.  So maybe, just maybe, his “stimming” was different than other autistic children – and only another parent can say whether or not they noticed the connection to emotions too. Feel free to let me know.

I do know that as he got older, and could communicate better with facial expressions, his hands didn’t twist or flap as often, and when a few words made it into his vocabulary that could describe how he felt, the flapping went extinct.

Stimming – it’s an awful word that suggests a child is not communicating with his environment – and feels nothing….. I hate the term.  It has nothing to do with autism.  Emotional communicating behavior would have been more accurate.  And as for holding his hands still?  As I said, after a few weeks of doing what the “experts” suggested I just gave up.  I watched him twist and flap and I knew his brain was working on how to repair communication roads.  I felt – I knew – that he was doing it for a reason, and I would not interfere with the process. It came to me one bright, sunny morning.  We were sitting in the kitchen, my husband and I, and Matt was on the back deck just twisting and twirling around.  How old was he?  Three?  Four? He had his Hot Wheel cars and a ramp to run them off of, and oh my, was he just the happiest little fellow.  My husband looked at me and said, “Shouldn’t we stop his hands from doing that?”

“No” I replied – a smile on my face.  “Look at his joy . . .” We watched the happiest person on earth roll one car after another along the ramp and into a flight pattern across the deck.  Each car then crashed several feet away and the response to the flight / crash sequence was pure joy.  Matt twirled in a circle and twisted both hands over and over, until he went to pick the next car for next aerial mission.

“He’s so happy . . . let him flap”.  And I never again quieted his hands.  Turns out I didn’t have to.  Matt did it himself, in his own time.  

The years flew by and those “stimming behaviors” (ugh! Just using it here hurts . . .), disappeared for the most part.  Matt grew and learned and moved forward every year.  He graduated number 4 in his class, with honors, in 2005 (the same year Autism Speaks was founded).  In 2013 he moved into his own apartment.  Matt is again doing the impossible – (still a trail blazer, that one), and I am so very proud of him. 

My advice to those new to autism and the flapping – let’em flap.  And during the month of April – Autism Awareness Month - can we please push to change that terminology from the inaccurate “stimming” to something more accurate, like “emotional communication behavior”?  Who’s with me?

 

World Autism Awareness Day – April 2 - has rolled around again and the battle cry for acceptance instead of awareness is again all over social media.  The acceptance campaigns complain about awareness and try hard to convince us that awareness is no longer needed – such an awful thought.  There can be no acceptance without real awareness and many people – especially the mildly autistic - seem to have a difficult time understanding that.  Shall I share a secret?  I think of those on the spectrum and hereby confess that I am still seeking awareness myself – even with having raised a moderate / severely autistic child for 29 years!  Acceptance has never been the issue - ever.  Awareness however, that’s a different story.

You hear people say, “If you’ve met one person with autism, then you’ve met one person with autism” – but they don’t really seem to understand that phrase.  Let’s see if I can get this across without offending half the people with autism.  I’m betting I can’t . . . because awareness is still lacking in most of the autism community about others on the same spectrum.  Hold onto your hat . . .

The high-functioning side of the spectrum has advocates and writers and people whom recognize their autism and have a voice.  The problem is most can’t seem to see the difference between themselves and an individual on the opposite end of the spectrum – those not in the high-functioning range like themselves.  Some are professional people with spouses, kids, careers, and talents that can shine brightly and bring comfort and empowerment to others like them.  They may have difficulties in some areas of socialization, or with some environmental stimuli, but they enjoy life – a full and wonderful life - where they are free to pursue those dreams and be those advocates, but unfortunately, in reading their stories I find they seem to have no clue to the difficulties of others with autism along the various degree -points across the spectrum.  Sometimes their words even come off as cold-hearted, and I admit that I have stopped reading their books and articles as a way to help my own son - because, quite frankly, they demonstrate a lack of awareness of autism as a whole. 

Now don’t go taking that all wrong.  Their stories are still valued as they reveal something else - a way to embrace their unique qualities, take pride in their differences, and while this type of awareness is glorious (good for them), they don’t speak for my son.  To see things from their point of view has been difficult for me.  Not one article or book has changed my view of my own son’s autism or given me an ‘Ah-ha’ moment as to how to help him.  Sorry, but it’s true. 

Nevertheless, I kept reading them for a different reason – as a way to open my mind to see things through their eyes, at their level of autism.  I admit I did find them helpful in understanding a few of my friends on the milder side of the spectrum – and for that, I thank them.  In my own search for awareness of the milder side of autism I have found it even more comforting and understandable in conversations with a dear friend of mine, Kay, who is high-functioning.  She has been wonderful and enormously helpful in illuminating the struggles of an autistic woman on that end of the spectrum.   But she’s a rare one.  Many I have asked fairly simple questions of, just shut me down, as if it were insulting to them to share with a non-autistic person. But most high-functioning advocates really are a blessing to the  awareness of high-functioning autism.

Unfortunately, many in that group are pushing to drop awareness campaigns in favor of acceptance campaigns – and yes, there is a difference.  For the most part, those talking the loudest about autism and acceptance have so little in common with my son that I find their complaints on acceptance to be rather petty in comparison to Matt’s struggles.  Yes, I just said that most sound ‘petty’.  I’m being truthful here, not looking for Brownie points. 

Try to envision it from my point of view.  I see mildly autistic individuals with jobs – good careers - and I see them having a spouse and children – a nuclear family with friends – an actual support system.  Here are people who enjoy the freedom to live their lives as individuals, make choices, strive and reach monumental goals.  They have a voice!  They are being heard.  Woohoo! Good for them!  But . . .  as I read and listen to them I realize they have very little in common with the struggles of my moderate / severe autistic son.  I have even been attacked on social media sites more than once for talking about the struggles of my son and by those who claim to have autism.  They seem to feel they know more about how to raise him than I do.  It’s hard for me not to think their unaware of the spectrum. Their concerns seem fairly minor to me when my main goal for 29 years has been to keep my son from being institutionalized - so, in my mind, in my world, their grievances seem petty in comparison.   Their remarks simply reveal an unawareness of a spectrum.  Do you get that?

I would give anything for Matt to have such opportunities in his life, for things to be as “easy” for him.  Oh for heaven’s sake, don’t go jumping up and down and pounding your fists quite yet – I am not saying their concerns are minor to them – only to me in comparison to my son.  Yes, they have a right to push for more acceptance of who they are, and their drive and courage is not something to be ignored or belittled by society – but they are the ones in the news, the ones screaming for acceptance and shunning awareness (as if we don’t need it anymore) and thereby keeping the autism light shining on their struggles – and their struggles don’t match up very well at all with my son’s struggles.  I say, go ahead, strive for acceptance for those similar individuals on the higher end of the spectrum, but stop complaining about awareness campaigns.  Awareness to me is everything

You see, my son was raised before autism’s giant surge, back when the prevalence was 1:10,000 and no one – not even his own doctor – knew what autism really was. Matt had already graduated high school by the time an awareness campaign was even conceived. We did this – got Matt through school, taught him interactions and how to be responsible enough to live on his own - without awareness and I know just what awareness has done for him since – it’s a big deal. HUGE!  Awareness means when he joins a recreation center that others know how to speak to him.  It means police officers will know what not to do that would cause him harm and anxiety and stress.  It means his doctor knows that just because he says he’s fine, doesn’t mean he really is.  Awareness if absolutely gigantic for Matt maintaining his independence!

So while those on the high-functioning end are wanting to scrap awareness and push for acceptance, those on the moderate end of the spectrum still need that Awareness, thank you.  And let’s go a step even further – Awareness is desperately needed for those on the severe end.  The severe end never makes it into the news.  Those parents don’t have much support at all.  Awareness could do wonders for them.  I read about those parents’ who truly need help 24/7 with their grown severely autistic children.  They struggle just to maintain hope. They are in constant need of support – emotionally and physically.  Every day they search for a way to cope with a life they never saw coming, a child that is massively loved, but taxing on the mind and body. They do everything they can to help their child – love has no boundaries in such things.  Their children – grown or not - have no bowel control and wear diapers, they wear headgear to prevent self-inflicted brain damage because they tend to slam their head repeatedly into walls. Their daily activities include washing feces off walls, trying to feed them, trying to take them for a doctor visit, trying to communicate with their child.  These autistic individuals – on the severe end of the spectrum - can’t speak a word and are trapped in a body they have no control over.  Why can’t awareness campaigns shine a light on them? The world needs to hear their plight also and in hearing and becoming aware of severe autism something could be done to help these families in crisis. Maybe autism research would ramp it up a bit - find the cause, find the cure?

How very different from the milder, high-functioning side of the spectrum to the severe end.  Now see if you can find that common thread between them that gives each a diagnosis of autism.  They are like night and day and the threads of commonality are hard to see, aren't they?.

In any awareness campaign for autism the first thing the public needs to know is that autism is an idiopathic neurological disorder – basically, brain damage.  Just the word “damage” makes those on the higher end fill with rage – but awareness would let them realize that autism IS damage.  It matters how much has been done to the brain.  So whereas a little damage can be embraced as making one unique, a lot of damage can be a lifetime of being trapped in a body you can’t control and voiceless to communicate your needs.  Matt has little in common with the severe end also, but much more in common with those individuals than he does with the high-functioning end.  I have found that it’s very  hard to find that common thread throughout the spectrum unless you really, seriously, look for it.  We are fortunate that Matt does speak some (even though he is mostly non-verbal) and that’s a huge deal in communication efforts. He can do so much more because he can make he needs known in one form or another (gesture, facial expressions, voice) and he’s not self-injurious.  That last one was actually why he was given that “moderate / severe” diagnosis - because he lacked that one single trait – injurious behavior.  It’s a ginormous difference.   Don’t ever think it’s not.

Matt is unique – just as each child on the spectrum is.  I am an expert in my child’s autism – just as each parent is for their own child. We share a common thread, the parents of autistic children, but we are as different as our children.  And so all I can really do to help the autism community is to spread awareness of what I know.  I write of my own path with my son – what helped, what didn’t, what he can do, what he can’t do - yet.  In sharing my stories I may be able to help someone, somewhere, who has a child with more threads in common on the spectrum to Matt than to either high-functioning or low-functioning,(from those whom are mild or severe autism).  And as I work with Matt I am still trying to be more aware of the differences of those on the spectrum – but it’s hard.  After all, isn’t it human nature to want to discuss the similarities?  

But Awareness is about the differences. 

What can you do to be more aware?  Focus on each child’s individual needs: his talents, his capabilities and areas of struggle.  Stop comparing this one to that one as to which is learning faster or more.  Remember, Autism is an idiopathic neurological disorder – basically brain damage of unknown origin (yep, I just said “damage” again!), and until people get that – get that the damage can be mild or severe or literally anywhere in between, then awareness campaigns must and should continue. 

Just I as I am only an expert in Matt’s autism – not autism in general – and therefore do my best to shine a light on the autism level he has: his struggles, his successes., I urge those on various points along the spectrum to shine a light on their specific level of autism and to please stop making generalizations about autism as a whole.  Let society see that autism takes many, many different forms, contains various levels of ability, and involves a plethora of struggles. 

And yes, keep in mind that if you’ve met one person with autism, then you have met ONLY one person with autism.  It really is that simple. 

Be aware that to increase your own awareness of autism you will need to seriously dig past that comfort zone and really examine the full spectrum.  Try to understand that autism is NOT just some evolutionary leap within the brain (as many people tend to believe) . . . Its brain damage (I’m sorry, but it is).

Take heart in the fact the brain can repair some of that damage by re-wiring itself as the child grows, and it will continue to do so throughout an individual’s entire life-span.  That means a child’s environment – both at home and in an educational setting – will have an enormous effect on the continued growth and success of that specific child.  Keep in mind that the amount of growth will also be determined by just how much damage was caused initially.  Now, combine the degree of brain trauma with the overall learning environment - this is why there is a spectrum. In addition, there’s lots of variables that can influence the brain’s ability to heal. 

Now, think about the prevalence of this idiopathic neurological disorder as it nears 1:50 children.  An epidemic of children with brain damage, ranging from mild to severe and everywhere in-between. 

 

Maybe now you understand why I continue to stress that Awareness Is Everything”.

Take the time to share your experiences with others - spread the awareness!

 

Light it up blue

Autism Speaks promotes autism awareness each year by asking for major structures around the world to be lit with blue lights starting on the evening of April 1 - 2. Although thousands will turn blue for the night, our own White House has yet to join the movement.  Send your own note to the president to please light the White House blue.

 

How will you light it up blue?  A single blue bulb lit on the front porch is enough to get the conversation going.