Friday 11 August 2017

The Autism that You DON'T see.........

"Oh, L is fine at school!"

"We don't see any of that, O is the model student!"

"Really, O/L is like that at home?"

These questions, these statements, can make interactions with teachers, educators and medical professionals quite uncomfortable. In a blink of an eye, questions and statements like these can turn a conversation from a pleasant one into, well ........... hackles become raised, voices become emotional ......... you get the picture.

Questions and statements like these can make the child's behaviour seem as though the parent is at fault and this in turn can cause us to question every little decision that we make and have made on our child's behalf.

Questions and statements like these cause a parent to shut down and not want to bring up issues with those who should be supporting them, instead of questioning them, for fear of the underlying judgement from others.

Questions and statements like these really highlight the autism that you don't see unless you are in the immediate family unit.

It really is a case of the autism that you DON'T see.

You see a child who is so rigid and seemingly unwilling to compromise on anything that their behaviour becomes annoying to you. The child who is acting like a spoilt brat.

I see a child who wants his world to stay the way that it is because then his world is predictable. I see a child who doesn't want to stray from her predictable world because the minute that her world becomes unpredictable, her anxiety is provoked into action and she becomes glued to one spot unwilling and unable to make any moves. I see child whose anxiety is like a tightly knotted rope and until that knot is loosened, she is physically unable to move or speak or participate in her much loved activities, including school work. A child who is not yet sure how to loosen the knot of anxiety. I see a child who is desperately trying their hardest NOT to enter into meltdown mode. 

I see a child who has strict and often very complicated routines and rituals for simple every day activities. And these routines and rituals have to be done the same way. Every. Single. Time. The tiniest deviation from these routines and rituals can result in an explosion of a huge magnitude.

You see a child is happy, who is chatty and gets along well with others but who can be very shy at times.

I see a child who knows that to stand out is a bad thing so she is compliant all day. I see a child who badly wants to fit in with others around her and yet she is unable to because she just does not understand the social interactions of others. I see a child who then struggles to keep it together all day that the minute she arrives home and walks through the front door, her pent up frustration and anger explodes. I see a child who knows that we are understanding and will remain calm so she feels safe to show this other side to us. I see a child who breaks down in tears because he knows that he is different and doesn't yet understand that different is good.

You see a child who is unable to focus on their work and is becoming disruptive as they move around the classroom or as they start to vibrate in their chair. You see a child is unwilling to do their school work unless they are removed from their classroom.

I see a child who is in sensory overload by their surroundings and is physically and mentally unable to focus until they have had a sensory break. I see a child who needs regular sensory breaks to assist them to focus. I see a child who is beginning to understand they need to have a sensory break but is not yet able to find the words to communicate his needs. I see a child who views being removed from their classroom as a punishment not as an opportunity to complete their school work.

You see a child who is rude or ignorant because they are refusing to speak or interact with those around them.

I see a child who is in sensory overload by all that is going on around them and the only way for them to cope is to shutdown and to retreat into their inner self.

You see a child who is a fussy eater and who you believe should be made to eat the food that is put in front of them.

I see a child with sensory processing difficulties. A child who has to wear the same clothes day in day out. Not for style, purely for comfort. I see a child whose skin feels as though it is literally crawling when particular textures are felt or eaten. A child who needs a lot of time and effort put in my others to try to increase the foods on their list of acceptable foods. I see a child who knows when we change a brand of food, they don't have to see the change in food label, they just know.

You see a child who is obsessed with a particular toy or subject and who you believe is spoilt as they seem to always have the latest toy, gadget or clothing item or costume.

I see a child who is in his comfort zone. A child who while wearing a superhero outfit is willing to venture out from his shell to interact with others. A child who is trying desperately to establish some common ground with others. A child who is willing to verbally communicate as he joins in on a conversation about his obsession.

You see a child having a tantrum.

I see a child who is in meltdown mode. A child who entered into sensory overload as a result of their surroundings. A child whose anxiety has become so crippling that the only way that they know how to cope is to let loose with screaming and yelling and throwing random objects. A child who desperately wants to escape their surroundings but they physically cannot find the words to voice their needs. I see a child who needs space and a parent who is calm with a seemingly unending patience level. I see a child who at that point in time is only able to communicate their needs through an angry outburst. I see a child who is not aware of their actions or words while they are in meltdown mode and yet is remorseful in the aftermath even though they have no recollection of the event.

What you are seeing is a mask, a front. 

Remember looks can be deceiving, not everything is as it seems to be.

The mask is the autism that you DON'T see.


  1. This a very interesting article. It's so true that looks are deceiving and when you see something out in public, you don't know the whole truth.

  2. Thank you so much for the lovely share. I wished to know more about Autism. This post has solved many queries of mine. :)

    1. I'm so glad that my post has helped you to understand Autism a little more.

  3. Thanks for the awareness. People see what they want to see and sometimes it is difficult for them to process the reality of what they don't see.

  4. It is all about the perspective. Look indeed, can be deceiving.

  5. You have described my child perfectly. We get these questions all the time. I feel as though I am the only one seeing my child do these things but reading your blog, makes me realise that I am not alone. Thank you for your honesty and openness when it comes to raising a child who is on the spectrum. Through your blog, I feel as though I am not alone. Love and hugs from another Autism Mom.

  6. I hope you've been able to get some help from your school district on this? My challenges with my girls are different, but before the eldest even started K I began researching our school district's website for information on kids with special needs in the classroom. I therefore knew to request a formal evaluation of her learning needs/accommodation needs on the first day of K, as well as how/to whom I should submit this request. That has made ALL the difference - several times now, we've had to fill out parent forms of what WE see, and the school psychologist also tests her AND has her teachers fill out forms - then the school calls a meeting for all of us to go over the results together. Especially if you already have a formal diagnosis of autism from outside your district, I hope you're able to request appropriate accommodations with that diagnosis, for all of your sakes! Good luck!

    1. We are getting the help from our school that my children need. Unfortunately not everyone believes the diagnosis. We're slowly changing people's opinions.

  7. Really good and insightful post. You have your hands full and I wish you and your family well.

  8. This gave me all the feels! I am a parent and a childcare provider , and I use to teach preschool. This can be a touchy situation for both teacher and parent. As a parent with a son with SPD , I had similar experiences. And as a teacher I had a student with autism and I was personally told from the director that I wasn't allowed to ever say anything negative about a child , even if their parent was asking. It was so frustrating when a parent would ask how the child's day was and I wanted to tell them honestly , they had a pretty rough day today ... and we just were not allowed to do so :(

    1. Wow, as a parent I want to know if my child has had a rough day as at times, the events of the day can effect the rest of the afternoon, evening and night.
      When I am talking to parents I always highlight the positives before telling them about the lows of the day. I also let the parents know about the solutions that we found to help their child.

  9. This is so informative! It does really depend on how the person is looking at things.

  10. This is truly eye opening. We can't assume that we have all the information to make judgments based simply on what we see. So true that not everything is as it seems.

  11. Yes! Such great information. My twins are just starting school, and the difference between them in school and them at home was pretty surprising to me. I'm not sure where we are yet, but it's good to keep reading information.

  12. I wish you nothing but blessing. I did not know much about autism and what that meant.

  13. Great information. And it's true, perspective is everything.

  14. What I thought I knew about autism was totally without foundation. Knowing you and your lovely family has opened my eyes to a new world - their world as it is to them. We can only give O & L love and hope they enjoy being with us as much as we love having them. Yes definitely - what you see is not what you always get. We love all of you heaps.

  15. Thank you! I hate the "you need to get your kid under control" looks I get from people in public. I hate the comparisons of parenting and "advice" on why their kids are so well behaved. Thank you for sharing your feelings. Hopefully someday more people will err on the side of love instead of judgement.


I would love to hear your thoughts on my blog. I do read all the comments that are posted. Thanks so much for stopping by. Jen xx