How did I know my daughter was autistic?

To be completely honest, I thought I was well educated on special education.  I mean after all, I have worked with several different students with a wide range of learning disabilities, physical disabilities, etc.  However, reality didn’t set in until I had my own child.  Let's face it, there is a huge difference between reading something in a book and living it.  My first child was a beautiful, healthy, bright eyed little girl.  As an educator, I had such high hopes.  I hung black and white pictures next to her changing table and read to her every day.  Then one day, my experience in education told me something was wrong with my beautiful baby.  Since her birth I struggled to get her to eat. She was very thin and the insurance company even sent someone to weigh her weekly.  All she did was sleep and then as she got older, it was impossible to get her to sleep.

Eventually, I learned that my daughter is autistic.  To be more specific my oldest daughter, Mary, has Asperger’s syndrome. To me it seemed like a very long time to get her properly diagnosed and treated. 

Today, when I tell people that I have a daughter on the autism spectrum they always ask 2 things:

1.“When did you know?” (Or what symptoms did you notice first?)

I always say, to be honest I knew almost immediately. I was sure by the time she was six months and had no doubt by the time she was one, that something was wrong.  At first I thought she had S.P.D. (Sensory Processing Disorder).  All autistics have sensory processing issues but NOT all people with sensory issues are autistic.

And

2. “How did you know?”

 In my daughter’s situation, it was her sensory sensitivities that were very apparent from the beginning.  Sensory sensitivity or sensory processing disorder (S.P.D.) is a neurological disorder that has trouble taking in, processing and responding to sensory information from not just the five senses (sight, smell, taste, touch, hearing) but with the proprioceptive and vestibular senses, too.  I had never heard of the latter two so let me explain.  Proprioceptive dysfunction is when your body doesn’t know where it is in space so your body has trouble positioning your limbs in relation to each other, which makes people with a dysfunctional proprioceptive sense appear clumsy. The vestibular sense is the sensation of body rotation, movement and gravitation that are controlled by the inner ear, which becomes apparent when you have a child that enjoys spinning for 20 minutes and can still walk a straight line.

I didn’t know what was wrong, but I knew that something was awry.  So I started to make a list, which was very helpful to medical professionals.  I recommend that everyone does the same with their child.  Click here to view a checklist of SPD related symptoms. http://spdsupport.org/resources/symptoms.shtml

Below is the list of some of the sensory related symptoms that I noticed and when my daughter Mary reached milestones.

Hyposensitivity Vestibular Dysfunction

• Craves fast, spinning, and/or intense movement experiences
• Loves being tossed in the air
• Could spin for hours and never appear to be dizzy
• Always spinning in a swivel chair/getting upside down positions
• Loves to swing as high as possible and for long periods of time
• Is a "thrill-seeker"; dangerous at times
• Rocks body, shakes leg/s, or head while sitting
• Likes sudden or quick movements

Proprioceptive Dysfunction

• Seeks out jumping, bumping, and crashing activities
• Kicks his/her feet in chair while sitting at table
• Sucks on fingers
• Loved to be swaddled but is satisfied to just be covered when sleeping
• Prefers clothes (and belts, hoods, shoelaces) to be tight
• Loves/seeks out "squishing" activities
• Enjoys bear hugs
• Excessive banging on/with toys and objects
• Loves "roughhousing" and tackling/wrestling games
• Frequently falls on floor intentionally
• Loves pushing/pulling/dragging objects

Auditory Hyposensitivity –

• Loves to make noise
• Loves loud music
• Needs directions repeated over and over

Hypersensitivity to Oral Input –

·         Extremely picky eater

·         Drinks must be a certain temp

·         Extremely picky about cups and feel of nipples

   As an infant Mary…

·         Never mouthed objects even when teething

·         Never put feet down to bounce on legs of a person; or in the “jolly jumper” or exersaucer

·         Never put pressure on her legs

·         Would raise legs into a seated position and hold them there when asked to stand up

·         Showed poor motor skills – (most of these were met with the dedication and hard work of the PTs and OTs)

·         rolled over (Nov. 10th 2007 – 4 months old),

·         disliked being on belly as an infant,

·         delayed in crawling (day before 1^st bday),

·         pull to stand (Oct 2008-15months old),

·         cruising (Nov 2008-16 mo. old),

·         stand up by herself in middle of floor (March 2009 – 20 months), take her first steps (mid January 2009 -18 months old),

·         will take a few steps with assistance (Feb 2009)

·         will toddle on own (April 2009 – 21 months)

·         When she finally did roll over she wouldn’t roll back to her original position

·         She doesn’t kick one leg at a time – instead she thrusts her legs from her hips bilaterally (stimming) Click here for a definition of stimming - http://en.wikipedia.org/wiki/Stimming

·         Took awhile to adjust to the feel of water, grass and sand (for months she had to be sponge bathed) (wouldn’t venture off outside blanket for fear of touching the grass) (took several days to acclimate her to the sand box)

As a toddler Mary…

·         Is constantly seeking thrill

·         Loves to rock

·         Loves to be upside-down

·         Loves to bounce

·         Loves to spin

·         Loves to climb

·         Loves to swing as high and fast as possible

·         Becomes distressed about having nails clipped or things in her hair

·         Likes to wear hats/hoods

·         Must have a hat/hood on to keep her hair from flapping against her head when jumping or swinging

·         Hates the wind or anything that causes her hair to move

·         Has frequent temper tantrums that can last 45 minutes

·         Has many mood swings

·         Becomes violent at times with herself (for no apparent reason will start hitting herself on the head or head-butting things)

·         Needs to be wrestled down to have her diaper changed

·         Likes to wear sunglasses

·         Does not stay asleep – very easily awaken

·         Is nearly impossible to get to sleep

·         Is extremely affectionate with people – loves hugs...although they usually have to be requested or initiated by her

·         Likes to sit on different objects – will sit on books, boxes, cans, toys, etc.

·         Sucks two fingers upside-down to soothe self

·         Randomly throws herself onto the floor

·         Is extremely difficult to feed (she is a very picky)

·         In constant motion – when sitting or excited her legs and arms are constantly flailing

·         Bangs or hits her head –not just when frustrated

·         Purposefully sticks her fingers in the back of her throat to initiate her gag-reflex

·         Seems very lazy – if anything is too heavy or too much work she gives up

Today, Mary is doing great.  Most people don’t even realize that she has a behavioral disability.  If it wasn’t for the early intervention that I sought after, I wouldn’t be able to sit here today and type this.  Don’t get me wrong, there are days or places that she still cannot tolerate.  For instance, Stop & Shop has lighting that still sets her off today.  However, things have gotten a little easier and I am fortunate to have an autistic child with the ability of speech.  After she is calm, we can sit down and try to figure out what set her off. My husband and I have also learned to watch for cues that signal us that she has had too much and needs to be removed from an environment.  This kind of learning, you can't learn in a book.  Some things, must be lived.