Autism: Is knowledge really power?

30 October 2014

Dear Friend,

When my son was diagnosed my husband and I were very open and shared the diagnosis with friends and family. Responses varied some were shocked, some disbelieved but overwhelmingly people commented about him being lucky to have me as a mum. Why?

In my role as a teacher I had been privileged to work in an excellent school that had lead the way in including children with Asperger's syndrome in the Primary classroom. I had lead physical programs (in consultation with physiotherapists and occupational therapists) to aid the development of motor skills, for autistic and Dyspraxic children. My friends and family obviously saw my knowledge and experience as a bonus. But is knowledge power?

His diagnosis was PDD nos, I had suspected Asperger's, so my initial reaction was to read as much information about PDD nos as possible. 
We also attended a parents course where we were given lots and lots of information. Some information was terrifying:
  •  "35% of autistics are never employed." 
  •  "Autistic children are more at risk of social exclusion." 
  • "Autistic Children are prone to depression." 
  • "Autistic children are 28 times more likely to commit suicide." 
In my experience knowledge didn't mean power it meant panic! 

The problem is that Autism does not fit into a nice neat definition, it is a spectrum. I can read every blog, web site, facebook page, book, magazine etc I can get my hands on but I will never find an exact description of my child. A wise person once said, if you've met one person with autism then you've met one person with autism. Perhaps knowledge isn't the answer? So what is?

I believe that knowledge can take us so far but it is love and passion that drives us further. I am no different from any caring parent that I have met as we all want the best for our kids. The love for our children drives us to set up websites, write books, lead seminars, begin support groups and write blogs. Isn't it time that we accept some praise? After all when it comes to our children we are the experts!




Who do you trust?

17 October 2014




Dear friend,

The day of my son's diagnosis a psychologist asked me if I trusted them. At the time I remember thinking, what a strange question but now I think that it is beginning to make more sense.

I had often heard people (mostly men) talk about the huge wave of love they felt towards their new born child coupled with a sense of overwhelming panic at the sheer responsibility of the task ahead. I strongly believe that women feel the same but that we are programmed not to admit it. Instead we trust our maternal instincts.




From the moment I held my children I knew I would do anything I could to protect them. I find handing responsibility over to someone else extremely hard. Yes, I know that I am a control freak but take a look at any mum having an emotional breakdown on her child's first day at day care or school and ask yourself why is she doing this? I have to trust someone else to look after my child?!!!!

Yet as a parent of a child with special needs I afford an immense amount of trust to the professionals dealing with my child. I hand him over to physiotherapists, speech therapists, psychologists etc and trust that they are the experts. But then I hear conflicting advice, or I am questioned about why we haven't tried "this" or done "that". How do you know who to listen to? Who is the expert? Who do I trust?

I trust my instincts and I listen to my boy.


Are we really helping our children?


Dear friend,

I recently attempted to organise a play date for my son.

Mum 1: not Wednesday because I work, Thursday is swimming, Friday football so the only day we can really make it is Monday.

This conversation is not unique, I hear it everyday but add into this equation therapy then this really gets complicated. He is currently having speech therapy, occupational therapy and swimming lessons (2x per week).

After school another child asked him to play.
Me: yes but you have therapy later so...
Him: my stupid busy body I wish I didn't have autism.


Half of me wanted to cry because he is right and sometimes, I must admit, I wish it too. Whilst another part of me wanted to celebrate this breakthrough moment. Finally, a realisation that he is not at fault or stupid, it is his autism that makes things harder for him.

We have set in place all this therapy to help make his life easier but is the long term goal worth the short term loss. 


Are we juggling too many balls?





What is different?


Dear friend,

What is different? I regularly hear that children on the autistic spectrum see the world differently from everyone else. I have always accepted this definition but now it comes to introducing the term 'autistic' to the big lad I am feeling less confident and comfortable. What kind of message is this giving to my son?



Different: not the same as another, unlike in nature form or quality: novel and unusual. 


The psychologist recommended that we begin by reading some children's books. I ordered everything I could lay my hands on from the local library but the theme continued. In most books the autistic child was represented as odd, an outsider and in one book they asked what is wrong with …

This is the polar opposite of how I want my angst ridden boy to see himself. To me he is simply a beautiful, funny, sensitive, loving, intelligent and sometimes cheeky boy. Autism is such a wide spectrum that it is impossible to find literature that fits my unique child. Instead we will read and discuss what autism means for him.

Is my child invisible?



Dear friend,

We had another appointment today. Before we left home he asked, where are we going mama? It is becoming increasingly hard to answer.

We sat and discussed him as he fidgeted in his chair, sucked his thumb or looked through his fingers. Most people assume he is not listening but of course he hears everything.

"How is he doing at school?" Dr S asked.

"I love it!" he replied.

I don't understand why professionals arrange appointments with children in attendance when they are not needed. Would you like to listen to people talking about you as though you weren't there?

I tried to explain. "This is the Dr for your busy body, mummy and daddy understand that you're very clever at some things like reading and drawing but that some things are difficult for you like buttons, laces so we try to get you help."

I spend my evening worrying about how this has affected my angst ridden boy. I know I overcompensate ( a visit to the toy shop after each appointment) this is getting expensive!


What is your system rewarding?




Dear friend,

Today was a good day. He got a sticker from his teacher.

I smiled to myself as he came out of school with one glove hanging off. I wrongly assumed he couldn't put it on. (Why do I always think the worse?) With a huge smile he thrust his hand in my face. I got a sticker for being still.

It's a system and I understand it, I've used it myself in the past with restless classes. The children are placed in groups and rewarded with stickers and points for being ready 1st, sitting still, being "good".




He had attempted to tell me about this system so it had obviously had a great effect. Any questions about school are usually met with an ok and a look that says everything. "Eh, I'm at home now, why on earth are you asking me about school?" (The school file is shut and locked away in his internal filing cabinet and he has no intention of opening it!)

A few days earlier the conversation had been different. I didn't get a sticker. I wasn't good. I aren't quick enough.

What is this system rewarding? Good behavior, listening skills, effort?

Is it fair?





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