Autism Understanding & Acceptance 2014 Day 22: Getting a diagnosis

I got another question from a friend that I will answer here (as well as privately).  The nuts and bolts of the question: how does one get a diagnosis?

Good question!  We've discussed what to say or not to say if you suspect autism in others, but not how to get an autism diagnosis.

There is no medical test for autism; no blood or genetic test*.  It's all done by observation and assessment.  You can screen for autism using the M-CHAT which was discussed earlier this month.  But an actual diagnosis involves a multi-disciplinary team that includes a child psychologist, speech and occupational therapists, a pediatrician, and possibly others.  Our "diagnosis day" lasted an entire day, meeting with these professionals while the others did their assessments & observations with T.

It is possible (I believe) for a pediatric neurologist, child/adolescent psychiatrist, or developmental pediatrician to do a diagnosis as well.  You may not get as comprehensive an evaluation as the multi-disciplinary team approach, but it might be quicker to get in with one of these professionals.  I know that the waiting list for a diagnosis screening appointment at one of our local children's hospitals can range anywhere from 6 months up to nearly a year.  More diagnostic centers are available each year, but there is still a wait.

Here are some websites that may be helpful:
http://www.cdc.gov/ncbddd/autism/screening.html
http://www.autism-society.org/about-autism/diagnosis/medical-diagosis/
http://www.autismspeaks.org/what-autism/diagnosis

And if you are in Indiana, the excellent Indiana Resource Center for Autism saves the day again with their "How and Where to Obtain a Diagnosis/Assessment in Indiana" publication:
http://www.iidc.indiana.edu/index.php?pageId=269

Taking the step of getting a diagnosis can be scary.  Believe me, I know.  In many ways, it was nice to keep my head in the sand for a while before T got his diagnosis.  But as tough as it was, it also gave us direction & motivation.  May it do the same for any of you considering a diagnosis, or for one of your friends considering it.

*While there is no medical test for autism, there may be some underlying medical conditions that contribute to the autism-like symptoms.  Also, genetic testing may be ordered to rule out other conditions.

Autism Understanding & Acceptance 2014 Day 21: "Sensory Friendly" opportunities

You may have seen me check in at a "sensory friendly" showing of a children's movie recently.  The Autism Society of America and AMC Theaters have partnered for several years to provide this wonderful opportunity for our loves ones on the autism spectrum.  This has been the only way we have been able to take T to a movie in a movie theater his entire life!  It is fun and satisfying to be able to do something that is so normal, so everyday for other families: going to a movie theater, getting popcorn, sitting through a film - we try to go every chance we get.

What makes them sensory friendly and why would that matter?  The lights are not turned down all the way, and the sound is not turned up as loudly as it usually is.  Also, (and this is key for us) their "Silence is Golden" policy is NOT enforced.  Guests may vocalize, get up & walk around, dance in front of the enormous screen - whatever their hearts desire and their bodies tell them to do!  So for our boy, who is happily vocal almost every waking moment of every day, this is a perfect opportunity to go to the movies.  We simply could not go to a regular showing - he just makes too much noise!  And then there is the inappropriate laughing too - sometimes if a scene is getting intense, he'll laugh even if it is a sad moment.  Probably wouldn't go over too well with a typical audience!  And I just don't want to risk the looks or comments, so we stick to the sensory friendly showing of movies, and have a terrific time. 

Increasingly, more performing arts and cultural events are offering autism-friendly or sensory-friendly opportunities to take part in their events.  A local Smithsonian historical outdoor museum, Connor Prairie, has Autism Quiet Zones throughout their park where a person who is overwhelmed can take a break.  These areas are quiet staff rooms or just an unused room where they've put a box with a blanket & fidget toys, and a family can go in there to regroup and stay as long as they need.  I have read that Broadway is offering sensory friendly musical performances (oh how I would LOVE to take T to one of those!!!)  And more sports facilities in our area are offering adapted programs such as adapted Yoga, martial arts, ice skating, etc!  

Is this necessary?  Well...I'll give you an example.  We needed the program at Connor Prairie -  and used it - a few years ago during their "Glorious Fourth" celebration.  There was a gathering outside where the Declaration of Independence was read and flags were waved which was all great fun...until they said "Let's sing the Star Spangled Banner" and everyone started singing.  Yeah, unexpected singing, the bane of our existence.  Thomas started crying and SCREAMING, completely terrified and angry and he was just undone.  We made as quick an exit as possible and found a staff person approaching us, who blessedly had a concerned but friendly expression and said "How can I help?", to which I said "Take us to the closest Autism Quiet Zone!"  We were there within moments, she showed us the box of toys & blankets, told us to stay as long as we needed, and left us to reboot.  15 minutes later, we were back walking the outdoor museum, all of us happy as clams and thankful for that Quiet Zone.  Without it, we probably would have had to leave for the day.      

So these adaptations, these "sensory friendly" opportunities, really open up so much more of the world for T.  

Autism Understanding & Acceptance 2014 Day 20: Church

Easter Sunday it seemed appropriate to post about our churches.  In our experience, they have been an unblinking support to us throughout T's childhood.  He was born into our church choir family in Virginia, and a bigger and more loving extended "family" could not have been desired.  Our kid had more aunties and uncles than he could count!  When he was a year old, we moved to a new state and started over with a new church.  His delays started showing up not long after we moved, and that church wrapped themselves around us through the scary build-up to diagnosis day, then supported us afterwards.  And then a few years later, we made our move to that state's capitol city, where we remain.  That was a scarier church hunt, having an elementary aged child with autism in tow when visiting a new church.  I'm thankful to say that anywhere we "church shopped" we were welcome, but our current church has embraced T beyond tolerance (that word is kind of tricky for me - when I see it on bumper stickers - don't we want to go beyond "tolerance" to embracing & including?).  Have there been bumps in the road?  Certainly - but the constant message is that T is loved and wanted there and we are all going to make it work however possible.

T is not a fan of unexpected singing AT ALL.  And sometimes, even expected singing is completely not cool with him.  But we walk into the sanctuary on Sunday mornings, and he looks at us and says "Sing".  He enjoys it.  He is happy during the services.   It's just more fuel to fire my belief that this child is connected to God.

Sometimes he's quite vocal about how happy he is, and God bless the people who sit near us every week, we've never gotten even a sideways glance.  

Thanks be to God for churches that welcome ALL - and I mean ALL God's children.  

Autism Understanding & Acceptance 2014 Day 19: "The Curious Incident of the Dog in the Nighttime"

Another pivotal book for me: The Curious Incident of the Dog in the Nighttime.  

Unlike The Reason I Jump, this is not written by a person with autism, but instead was written by someone who had worked with several young men with autism spectrum disorders.  This fictional main character is a young adult male who discovers that the neighbor's dog is dead, and the adventure that ensues when he tries to unravel the mystery of why.  Sounds a little dark, I know.  I must add that the character never says that he has autism, nor do his parents (also characters in the story).  But as you read it, especially for those of us who live in the world of autism, you pick up on what's different about this character very early on.  He creates strict routines that he must follow, rules for what constitutes a good day or a bad day, explains why he does not like the color yellow...all of it completely logical but completely different from any train of thought that us NTs (Neuro Typicals) would have.  Fascinating book - and again, I feel I gained insight as to how the mind of these very different but completely abled brains think.

This book had a wide range of reactions by its readers.  Many people thought it was hilarious.  Others found it very depressing.  I can see why both reactions occur.  For me, I was just completely transfixed by this main character and his thought processes.  

As I'm typing this entry, and thinking about yesterday's post about The Reason I Jump, I'm realizing that much of the reading I've done on the subject of autism, and much of what motivates me, is trying to get inside their brains.   Not books on potential cures, exposing "Big Pharma" or books by another mom whose child has recovered.  Nope.  I want to understand how T thinks, if at all possible.  

My confession: I am fascinated by the autistic mind.  (Good thing, isn't it?)

Autism Understanding & Acceptance 2014 Day 18: "The Reason I Jump"

In keeping with the theme "What has been helpful" this year, I must include books that have opened my eyes in one way or another.  This is the most recent book I've read on the subject of autism.  The Reason I Jump is written by a 13 year old young man from Japan who has autism named Naoki Higashida.  It written and translated in question/answer format.  I felt as I was listening to this book (I do a lot of "reading" via audiobooks these days) that I was getting an honest & true glimpse into a mind that is absolutely different, but not one iota less.

The recurring theme that Naoki shares is: be patient with us.  We don't want to cause heartbreak or stress.  So stick with us when we are having a rough time.  Sometimes we just can't help it. We want to please you, we want to do well.  

After hearing this young man's book, I have doubled my efforts not only to keep my cool when T is having a rough time, but also to imagine what he is going through at that moment.  It doesn't make those times easier necessarily, but it does help me get out of my own head during those times.

Autism Understanding & Acceptance 2014 Day 17: Craniosacral therapy, Myofacial release, Reiki: alternative energy work

Over the years, we have tried lots of alternative treatments & therapies, not wanting to leave any stone unturned.   We have kept a group of treatments that I will categorize as Energy Work in T’s regular treatment plan: Craniosacral therapy, Myofascial release, and some Reiki when possible.   One of his previous therapists even knew how to do muscle testing, and created wonderful liquid tinctures that T’s body “told her” it needed.  All of this gets difficult for me to explain in definitive terms…except that I keep it up for him because I believe that it is helping.  He is a child whose body is almost always on the move.  Flipping a bracelet, bouncing & jumping when happy – this kid is active!  But during these sessions, I can see his body completely relax and be still.  His stress level dissipates, and the looks of love and peace that come over him (and that he shares with me and his therapist) absolutely convince me that he is benefiting from these treatments.  And that’s enough for me to keep it going.   

But beyond that, I believe that this quiet time also feeds him spiritually.  Of course I don’t have any hard evidence of this, except that I sense that this child growing young man is very deeply connected to God and the spiritual realm.  It doesn’t hurt that the women who have provided these therapies to him see him as an absolutely pure soul.  They see no disability, and see his differences as a gift to be nurtured and cherished despite the world not understanding or seeing.    

Austim Understanding & Acceptance 2014 Day 16: Kind words from professionals

Today, I was reminded how truly lovely and uplifting it is to hear positive words about T from the very professionals that work with him or just know him.   This happened today quite unexpectedly and it has left me smiling inside since this afternoon.  I went to pick up T from middle school, as I do everyday.  I go inside and hang out in the entryway, waiting for T to arrive.  During that time, I usually enjoy a few moments to chat quickly with his teacher - to hear how he’s doing, if there were any great or not-so-great things that I needed to know about, etc.  Nine times out of ten, I am hearing about cool things that T did (or tried to do), and little triumphs he had that day.  I usually come away feeling pretty good about where T is spending his days and his time. 

Today his teacher wasn’t available to chat for long, so I waited for T to pack up his backpack & put on his coat (completely independently, by the way!).   The assistant principal, who was monitoring the hallways during class change time, saw that I was on my own and approached me, asking if I was T’s mom.  He then told me just how much they enjoy having T at school everyday, and how well he is doing.  I grinned and thanked him, and said that he does have a way to getting into people’s hearts.  The assistant principal agreed wholeheartedly, and proceeded to tell me that the students & teachers really like him.   He then put his hand on my shoulder, looked me in the eye, and said, “Never underestimate how important it is that he is here.  The students learn so much having him here.  He makes them grow up and think less of themselves.  And he learns so much from them too.  It is so good to see.”

Looking back at him, I took a deep breath to take that all in, and thanked him for those kind words – and told him it meant a lot to hear that.   At that moment, T was approaching with his huge smile, and I said to the assistant principal, “Look how happy he is here.  He is really happy being here.”

And with that, the bubble burst.  One of the para-educators from T’s classroom walked up with T and proceeded to tell me how much the zipper on his backpack really made him mad.  (Um, yeah – he looks really mad with that wide smile across his face.)  So I just said that yes, that can irritate him but it is usually short-lived.   This is not the first time, or the only para, that brings him to me with this sort of update.

Then I started thinking about communication.  How often do we, as parents of children with disabilities, hear about every minor infraction, every frustration expressed, every mis-step?  If the para were to bring him to me everyday, I would probably get very little feedback other than “the backpack irritated him”, "he was grumpy today" or “he pushed me away” or some other imperfection of his day instead of how hard he tried in math class, or the cool experiment he got to see and help with in science.  

It was a fantastic “compare and contrast” moment.  Have no fear: the little minor frustration expressed by the para in no way diminished the wonderful exchange I had with the assistant principal. 

Parting words: if you are professional working with kids with special needs (or heck, ANY kid!), don’t start off a conversation with me by telling about every minor infraction or frustration you have with my son.   If you need to brainstorm with me, ask – I’m happy to do so.  But remember, any minor frustration you have, we experience at home every other hour of the day.  I know about them and don’t need to hear about them.    In the words of a dear departed friend: “Three rules of communicating with others: Be kind.  Be kind.  Be kind.”   Thanks, Mr. Assistant Principal, for being kind today.