Thoughts from Dad: What I wish you knew about Autism

Did you know April is Autism Awareness Month? Bam! You’ve just been made "aware". I’m not sure what awareness does other than simply get you to think, "Hmm, Autism exists. Now I am aware!" Perhaps now more than any other month, you might be motivated to do something you wouldn’t otherwise do for an autistic kid, or his handsome dad (Let me also make you aware that our kitchen is in dire need of straightening up, if you want to help).

Nevertheless, "Autism Awareness Month" it is, so I would like to take this opportunity to make you aware of some things you may not have already known.

1) My son, Matthew, is autistic. He is three years old. We call him "Matt-Man".

2) Autism is real.

Many (presumably those whose kids are not autistic) excuse it by saying, "Every child is different." True, but there is a range of "normal" and my son, and other autistic kids, fall outside of that range. There is "normal", and then there is "Something isn’t right."

Many (presumably those whose kids are not autistic) think it is one of those things like "ADHD" which has a reputation of getting overprescribed and overmedicated and blown out of proportion. I would challenge you to take my son to live with you for a week and see if you still think that’s true. Matt-Man does not make nor keep eye contact. He does not volunteer affection. Matt-Man is a social misfit—If there is a group of kids playing together, he will avoid them at all costs. Matt-Man cries when he is upset and will not—cannot—tell us why. Matt-Man has severe sensory processing issues—sometimes the only thing that can calm him down is to put a stocking-cap on his head, even in the summer; he requires daily brushing, scratching, and squeezing from head to toe. Matt-Man cannot jump, flaps his hands, crawls on the floor while rubbing his head on the carpet, lines up his toys in perfect rows, and can open and shut a cabinet door for hours. All of these things are true and Matt-Man is only mild-to-moderately Autistic. They are exponentially worse for other kids.

3) Some of Matt-Man’s weird quirks are endearingly adorable. Unlike many other Autistic kids, Matt-Man is verbal, and he starts every sentence (and I mean EVERY sentence) with either "I want…" or "Oh no!" "I want a cookie." "I want to go potty." "I want to throw me on the couch." "Oh no, the baby’s crying again." "Oh no, it’s raining outside." "Oh no, I peed in the bathtub." Also, he is monotone. By that I mean he talks in the note "D". Sometimes it is an "A" but most often it is "D". I could almost tune my guitar to the note his voice makes when he talks.

4) Autism is not caused by vaccines. a) Matt-Man and my other two children were vaccinated against the same things, yet only one is autistic. It would stand to reason that if one child were autistic, all of them would be, or none of them would be. b) The "science" that "suggested" there was a link between vaccines and autism has been debunked by the scientific community. It was downright fraudulent. As it turns out, a handful of quacks, led by Dr. Wakefield, using too small of a sample and questionable scientific methods developed a "report" which was later retracted by the broader medical community (http://www.bmj.com/content/342/bmj.c7452). (We should also thank former playmate, Jenny McCarthy, for jumping on the "anti-vaccination" bandwagon, spreading bad science). On a related note, if you haven’t vaccinated your kids, please let me know so my kids can avoid your kids like the plague (which, coincidently, vaccines eradicated).

5) Matt-Man is not stupid. Quite the opposite, he is very smart. He can follow simple commands, do some problem-solving, and he is incredibly resourceful. For example, we have a pack-n-play in our living room for the baby. Matt-Man wanted in one time, but the walls of the pack-n-play are too tall for him to climb. So, he independently went into his baby sister’s room, grabbed a small child’s chair, dragged it to the living room and used it to boost himself into the pack-n-play. Dumb kids with no problem-solving skills wouldn’t be able to do that.  In addition, he has a sense of fairness – if other kids are getting treats, he wants one too.  Just recently, he was in a situation where the adult in charge gave all the kids a piece of hard candy (a notoriously bad idea) except for Matt-Man because, ironically, she understood that would be a notoriously bad idea.  Matt-Man proceeded to melt down at the injustice of other kids getting a treat except for him.  He knows the difference between right and wrong.

6) Matt-Man, like other autistic kids, is a kid first; not a label, a statistic, or a science experiment, but a kid. He likes to laugh and be tickled. He likes to tackle his daddy (and as comes with the territory, likes to injure daddy with a swift knee to the crotch). He likes to be thrown into the air and thrown onto the couch. He also likes sitting on mommy and daddy’s lap having a book read to him. He likes eating candy and cookies and does not like eating vegetables. He steals candy and cookies and throws vegetables on the floor when we are not looking. While he does not often volunteer affection, he loves hugging and being hugged, kissing his baby sister, giving and receiving hi-fives. He likes going down a slide and swinging on a swing set. He likes playing in dirt and picking up worms. He likes being mischievous and causing trouble, like putting dirty socks on his brother’s head. He likes playing with cars, throwing balls, watching Thomas the Train and swimming. He likes petting, playing with, and being licked by the dog. He thinks bodily noises are funny and fights us when it is time for bed.

7) I love my little Matt-Man; not more than my other two kids, and certainly not less. And while I would not have signed up for having an autistic kid before we had Matt-Man, fully acknowledging that some days are worse than others, I would never in a million years consider going back. I will take my Matt-Man with all the frustrations, challenges, joys, and opportunities he affords and will continue to thank God for the incredibly wonderful enigma that is my son, Matthew.

ABA (Applied Behavioral Analysis)

Matt has been in ABA therapy at a private preschool for 2 1/2 months now.  It was so hard to go from having my little boy home full time with me to suddenly being in school for 25 hrs a week. 

ABA is hard work for a little 3 year old.  The first few weeks he would come home exhausted, go right to bed, wake up for dinner, and go back to sleep for the night.  Every day was the same thing.  I have to believe this is the right thing to do.  The most widely accepted research states that this is the best way to help a child with autism.  It is hard as a mom though.

I wish I could keep my little guy home with me.  Let him spend his days playing outside with his brother and sister.  This is his big brother's last year at home before starting kindergarten - part of holding Nathan back a year was to give the boys another year at home together to just be kids.

So, is the ABA therapy working?  I guess so in some areas.  They tell me Matt is passing his programs and doing great.  He is becoming more independent.  The potty training is starting to actually produce some good results. 

I don't know if he is talking any more though or connecting with us any better than before.  It's only been 2 1/2 months, so I'm sure these things will come, but I wish we could see big results a lot quicker. 

He is just now getting to the point where he is not utterly exhausted after school every day.  Now I have to make the decision on whether to get him started in his prescribed occupational therapy 2-3 hrs per week and his prescribed speech therapy 2-3 hrs per week.  More hours of not interacting with my son, but his developmental pediatrician feels that he needs this.  My mommy heart wants to just let him be 3.  I wish I knew what to do.

Emotions

It really is remarkable how many conflicting emotions we have experienced over Matt's diagnosis.  For me it started with denial followed by deep grief over the loss of what MY hopes and dreams were for my child.  I worried that he would always be stuck in his own world and never have deep meaningful relationships with others outside of his own family.  This was mingled in with fear - will he ever be able to live independently?  I have so much uncertainty about what the future holds for him or our family.  Mingled in with these emotions was a deep sense of relief that we finally knew what was going on with our child and could understand him a little better, and help him be the best that he can be with what therapy is available at this point in time.

I am at the point now where I have accepted the diagnosis and have discovered a lot of joy in being able to relate to my son a whole lot better than I was before when I expected him to be "normal".  I am much more sensitive to his subtle cues than I ever was before.  We do have a lot of very hard days.  Days when he cries a huge portion of the day and can't tell us why in spite of our best efforts to break through to him.   Days when he hums or sings to himself all day and gives us zero eye contact.  Then suddenly, something will strike him as funny and his blue eyes look deep into mine and his whole face lights up in the most beautiful smile.  I love catching these glimpses into his world.  There is so much more to Matt than he lets on. 

Those who know me well, know that I am not prone to outward displays of emotion - Matt gets some of his introverted nature honestly - but sometimes I am caught off guard by somebody who is particularly kind and caring in their question of "how are you doing, really?"  These are the moments that I want to break down and cry right there.  I can't summarize all of my emotions, but the fact that they truly cared and wanted to know is enough to make my day.

My husband, Danny, is not prone to outward displays of emotion either.  I've known him for 10 years and can count on one hand the number of times I've seen him cry.  He is absolutely right in his statement that the label of autism doesn't change who Matt is, and it just helps us know what to do to help him.  Even he has been affected by some unexpected cycles of emotion though.  It hit him in the sports aisle at our local department store that Matt may never be able to play a game of catch with him.  That was when the tears came for him.

My son, Nathan, is 5 years old and has had a rough time figuring this all out.  We tried to explain what autism was to him, but it's difficult to explain to a 5 year old.  We told him that Matt's brain works a little differently, that he's a smart kid, but he just has a hard time with a lot of things that come easy to the rest of us.  At first Nathan thought that autism was contagious - he didn't want to sleep in their shared bedroom for fear that he would catch it.  He also wanted to know if you could die from autism.  This was heartbreaking to hear, but I gently explained to Nathan that autism is something you are born with, that is just means your brain works a little differently, and that no, people do not die of autism.  In a typical kid-like fashion, he rebounded from these emotions within minutes and was fine sharing a room with his brother again.

I've found him to be a lot more patient and protective of Matt than he used to be.  He also has a lot of pride in his voice when I hear him tell other kids that "my brother has autism, his brain works different".  One thing that really seems to have helped him is enrolling him as a "peer buddy" in the autism school that Matt is attending.  He is interacting with kids his own age with mild to severe autism, and seems to be a little better at understanding that different is okay.  He has one buddy at school who runs up to hug him whenever he sees him, and I've seen them walking hand in hand at school.  I really think Nathan is already an awesome brother to Matt and will only get better.  He actually fights more with his 7 month old precocious baby sister than he does with Matt!

Audrey will grow up accepting autism as a part of daily life; she won't know any different.  At 7 mos old she is always crawling over to Matt and joining him in whatever he is playing with.  I actually think it has been great for Matt to have a baby sister.  She clearly loves him, and it is much harder for him to retreat into his own world and perseverate on a task when baby sister is crawling all over him and stealing his toys.  He seems to have a very soft spot for her already.

There will be a lot of ups and downs with autism, but this happens with parenting anyway.  Right now the difficult days seem to outweigh the really good days, but I am confident that as we grow in our role as parents and as Matt gets the therapy he needs, that the balance will shift.  I feel incredibly blessed with the family I have been given and would not trade any one of my kids for the world!

The Long Road to an 'official' Diagnosis

There is enough awareness being raised in this day and age that most of us know how crucial early intensive treatment is to having good long-term outcomes with autism.  With that in mind, I assumed that once I mentioned my concerns to Matt's pediatrician the referrals and treatment plan would follow very quickly. 

I emailed the M-CHAT results to my son's pediatrician that very night.  A month later we talked about them at Matt's routine 3 year old check up.  A month after that we finally got in with an occupational therapist for an evaluation.  She was concerned that he might be on the spectrum, so scheduled us a follow up appointment to get a 2nd opinion from a speech therapist.  That appointment was scheduled several weeks later (all this time, my son was not in any type of therapy, mind you).  The speech therapist had the same concerns and recommended an appointment with the developmental pediatrician.  The earliest appointment the developmental pediatrician had available was 4 months out (I later learned that this is not bad compared to some areas of the country where patients have to wait 8-9 months).  We and our general pediatrician called the office several times, which is probably why when there was a cancellation, the developmental pediatrician offered the appointment to us - this allowed us to get in 3 months sooner than we would have. 

The diagnosis was pretty clear cut and expected, our son was autistic.  For us, the journey from the failed M-CHAT to an 'official' diagnosis was almost 4 months to the day, and this was significantly shorter than most people have to wait. 

Okay, so now what?  The doctor recommended 25 hrs per week of Applied Behavioral Analysis (ABA) therapy.  He recommended we get an educational diagnosis of autism through the local school district so that we would qualify for our state's autism scholarship which we could use to pay for one of the private autism schools in the area if we were willing to opt out of the public school options.  I later found out that getting an educational diagnosis of autism would have qualified him for this program even if he never received the medical diagnosis! 

If I had to do it over, I would have set up an evaluation with our local school district the minute I had concerns.  We could have gotten that educational diagnosis and started ABA therapy much much sooner!  Instead, it was another month and a half waiting for that educational diagnosis and then I had to submit all the paperwork to the state to get approved for the autism scholarship.

My son was not yet 3 when we had our first concerns that he might be autistic.  He was almost 3 1/2 when he had his first day of ABA therapy.  There is something wrong with our system.

Trust your instincts

I think most of us with an autistic child share the frustration of having had our concerns explained away and missing clues to an earlier diagnosis.  Hind sight is 20/20 after all.

I voiced concerns about Matt's development several times, but he passed his M-CHAT (autism screening test) at 18 months and 24 months, so I was reassured that he was just developing at his own pace.  After all, every child is different, and Matt was so quiet and laid back that we just assumed it was a personality issue.  We decided that since his screenings were all normal, that he was just going to be an introvert.  He had also had a lot of ear infections, so the doctors and I thought that maybe this was the reason for his speech delay.  All of a sudden Matt started to talk at 2 1/2 years old (we later learned that all he had was echolalic speech, but we didn't know that was something to worry about at the time), so we pushed the secret fears even farther away.  When he had an abnormal gait at 15 months, we took him to a nationally renowned specialist in pediatric orthopedics.  We were assured that he was within the realm of normal and to come back if he was not walking well by 24 months.  All he needed was time.  He had extreme aversions to textured foods, but the pediatric dentist noted a highly arched palate to explain that fear away - he just couldn't mash food well because of his anatomy.

Deep down inside though, I knew Matt was a special kid.  He just had a vulnerability about him recognized by all - we couldn't put a finger on it.  As he got closer to the age of 3, my fears that had been suppressed for awhile started to resurface.  He just wasn't catching up with his peers.  In fact, the differences between him and other kids his age were becoming much more apparent.

It really hit my husband and I one day when we had some kids over for a play date.  The pack of children would be playing on one side of the backyard, and Matt would be on the other side of the yard.  Wherever the pack of kids went, Matt would go the other way.  I didn't want to consider the word 'Autism' as a possibility.  I had the irrational fear that if I said the word, it would make it true.  It would cause my perfect child to be something less.

Around Matt's 3rd birthday, I brought the matter up with my husband.  The conversation went something like this:  "did you ever think that maybe Matt is the "A" word?"....... I couldn't even say the word for fear it would make it real.  My husband said, "well, yeah, but you didn't seem worried so I never said anything."  My response:  "well, you never said anything, so I thought I was being overly concerned."  We pulled up an online M-CHAT, filled it out, and had it automatically scored.  We didn't realize just how much regression had taken place between ages 2 and 3, but this was the first time he had failed it.  The dreaded result:  "your child is at risk for autism, see your doctor" came up.

I just stared at the screen in front of me, letting it sink in, a million thoughts running through my head.  I'm a medical professional in pediatrics, how could I possibly have missed this in my own child?  I got out my journals and reviewed the diagnostic criteria for autism with a more objective eye toward my own child.  Sure enough, he fit criteria perfectly.  I'm trained to recognize autistic spectrum disorders, how could I miss it in my own son?  Thus began the journey towards an "official" diagnosis and getting help.

This experience has made me a better practitioner.  I've learned that if a parent is concerned about their child's development, even if they've passed all of our validated screening tools, you need to take them seriously.  At the very least, they deserve to be referred to early intervention services or the developmental pediatrician for a closer look.

My ever contemplative Matthew at 3 years old

Getting started

I need a place to put down some of my thoughts.  So much has happened in the past year, I don't know where to start.  A year ago, 'autism' was a word that rarely entered my vocabulary outside of the work realm (I work in a pediatric office).  Now it's an integral part of my life.

I can explain the difference between autism, PDD-NOS, and asperger's without any difficulty.  I use words like "stimming" and "perseverating" in context.  I've spent countless hours studying the latest research, battling with insurance companies for coverage, making appointments with specialists, therapists, and school evaluation teams.

Initially I obsessed over the diagnosis and spent my nights worrying and researching instead of sleeping.  I almost allowed the word 'autism' to take over my life.  Meanwhile, my precious little 3 year old boy, hadn't changed a bit since being officially labeled.  He was still first and foremost a 3 year old little boy who needs his mommy and his naps!  He adores his big brother and baby sister and can charm the pants off of anyone who meets him.

He brings a very special dynamic and joy to our household, in spite of the unique challenges.  This is going to be an interesting journey for sure.