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 go to sleep.

How Did I Know My Daughter Has Autism?

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

  1. “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

How did you know my son is Autistic

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Below is the list of some of the sensory related symptoms that I noticed and when my daughter (Mary) reached her developmental 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…

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 1st 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 be acclimated 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

This article was featured in Issue 1 – A Look At Sensory Processing Issues

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5 Responses to How did I know my daughter was autistic?

  1. I read this and it was like reading about my own 8 year old daughter, to the ‘t’, brought tears my eyes as I’ve got a diaognosis of SPD and Dyspraxia but am still fighting for ASD (aspergus) as without this her 2 hours per day 1:1 is going to be taken away & her school believes she needs more support not less. She is on panel in July and so far I believe that she will be diaognosed then, thanks to the support I got from her new school (mainstream) and the continue fight from me and her dad. Her old school (SEN class) would not support me and kept saying nothing wrong. How can a sen class not notice these things after being there for 3 years when a mainstream class noticed within 2 weeks of her being there??

  2. Hi the tantrums could be overload.By the time you see signs of distress she has prob been trying to calm herself prior.we only go to calm,non chaotic,quietish environments .I never take our seven year old in to a potentially distressing environment.his mind is like an anxious chess game so he can’t cope with random starting or finishing of activities.he needs constant structure,calmness,no attitude in our voices.autism is a heightened sensory.emotional,anxious,motor stressful existence .Drinks,food,toilet ting,rest and sleep need constant vigilance/prompting as they are too stressed to care for their basics.we water and feed our child prior to going out so he is relaxed enough.Know her intelligence and cater for this constantly.

  3. This was honestly a description of my grandson. I think we knew right off the bat too. It was consistently overlooked by our Pedi because my daughter had a girl 13 months prior and the pedi kept saying boys are way different stop comparing. I was vigilant tho and insisted on seeing a pedi neurologist. Finally we met with a team of specialist at Tufts Floating my grandson was diagnosed with Autism at 19 months old. He displays many of the symptoms as you say your daughter did. He also enjoys blocks and building high towers over and over. He stims only when excited by a song or a tv show and sometimes in his high chair and again does both arms and legs. He has very little vocabulary at 2 , most is just repeating with out much meaning , ” ready set GOOOOO” , and if you count he will follow along. We pray he will be verbal because he is frustrated by not being able to tell us what he wants causing more tantrums. Bright lights are defiantly a factor. He is also very affectionate, he loves to make 2 people kiss then puts his head in-between so both people can kiss him.. he giggles and giggles. Thank you for posting!

  4. Can you clarify for me what you felt was the difference between her Senory symptoms and what you saw as ASD? My daughter has SPD and has almost all the signs you describe but is more an avoider. Thanks.

  5. I’d just like to note that some folks experience the opposite, and are hyper (overly) sensitive to spinning, sound, touch, motion, etc. (raises hand). So for everyone to be careful not to take your child’s symptom list as the end-all description of Asperger’s/autism. This is the problem, we can have so much variation in our issues, no wonder everyone is confused. (I even have one friend who switches between hypo and hyper sensitive from one day to the next, or venue to venue. Not confusing at all!)

    I would also like to gently suggest changing the word “wrong” in this sentence to “different” from the average. (What is “normal” anyway? According to whom? Your norm, or mine?):

    “I was sure by the time she was six months and had no doubt by the time she was one, that something was wrong.”

    I’m guilty of the same often, but am working hard to change my language around autism in any form: it’s a difference, not a disease. You would no more expect your dog or cat to start “talking” than you should expect a person with hyperacusia to love loud music. Yet we do expect these things because we appear to be the same species as the majority wild-type humans. (Who would you say has a “hair disease” – black or brown hair?)

    Otherwise, thank you for this honest sharing. And congrats and best of luck continuing to parent a neuro-atypical child. You are clearly a very loving parent she’s lucky to have.

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