Gilbert in New Zealand -
Gilbert in New Zealand -

Our Autism Story

It took a long time for us to realise that our son had more than just issues with his vision.  We genuinely thought his unease with strangers and his dependence on routine was a result of his earlier diagnosis of albinism.  We didn’t realise that his phenomenal memory, constant questioning, inability to cope with change, fixation on books and Pixar movies, constant anxiety and his explosive tantrums were symptons of autism.

I vividly remember the first time the idea that he had autism was suggested to me.  He had just turned 3 and his family daycare worker, who had previously worked with kids with autism, asked me whether we had ever considered that he may be on the spectrum.  I looked at her, in shock, and quickly denied it. I mean, it was a ridiculous idea, I knew he had special needs but it was due to his vision problems. He couldn’t have a second diagnosis, life couldn’t be that cruel to him.

Soon afterwards, our youngest nephew was diagnosed with Asperger’s Syndrome, a disorder on the higher functioning end of the autism spectrum. I felt so sorry for him and our brother and sister and silently felt relieved that we ‘only’ had albinism to worry about.  But as I started to understand the challenges our nephew faced, the idea of our son having autism kept gnawing at me, until I could no longer ignore it.

I am afraid that I did keep my head in the sand for some time, grappling with the enormity of what we might be facing. I eventually realised that I had to do something so I educated myself by reading reference books about the disorder. I found with every description of typical autistic behaviour I read, my insides twisted with the recognition that they were also describing my son’s behaviours. I remember sobbing in the middle of Borders one day, knowing deep in my heart, that my son had autism.

Grieving for his ‘lost’ future the second time around was unbelievably painful – more so as I had to face it virtually on my own.  My husband took a long time to accept that our son might have autism and I found myself doing the legwork to get the necessary assessments done to obtain a diagnosis. He eventually accepted the diagnosis (and he is my absolute rock now!) but our separate bouts of grieving meant that it took a long time for both of us to be in the same place – it was a horrible, uncertain, stressful time, I hope to never be in that mental place again.

Two days after my son’s 4th birthday, after having a massive meltdown in the paediatrician’s office, he got a diagnosis of high-functioning autism. We were referred to Autism Spectrum Australia (ASPECT) and by the end of the year we had secured a place in their Hunter School for him. He was educated there for 3 years, finally making a successful transition to a mainstream class in 2012. I truly cannot believe how far he has come – his amazing progress is a testament to the wonderful support and assistance that ASPECT and his team of therapists and specialists have provided over the past 5 years.

I will leave it to the experts to provide information about the range of Autism Spectrum Disorders out there – far too complex for me to even start to explain!  The following excerpt is taken from the ASPECT website.  My son was a student in an ASPECT satellite class and made huge progress during his time there – they are a wonderful organisation and deserve everyone’s support!

Autism Spectrum Disorder (ASD)

Autism is a lifelong development disability characterised by difficulties in social interaction, communication, restricted and repetitive interests and behaviours, and sensory sensitivities.

These behaviours often manifest in an intense and focused interest in a particular subject matter; stereotyped body movements like hand flapping and spinning; and an unusual and heightened sensitivity to everyday sounds or textures.

People with autism experience difficulties with social interaction and impaired and unusual verbal and non-verbal communication.

The word spectrum reflects the wide range of challenges that people with autism experience and the extent to which they may be affected. An estimated one in 100 Australians has autism; that is around 230,000 people. It is four times more common in boys than girls.

The quality of life for many children and adults can be significantly improved by an early diagnosis and appropriate evidence informed treatment.

The three main areas of difficulty are:

1. Impairment in social interaction
May include:

  • Limited use and understanding of non-verbal communication such as eye gaze, facial expression and gesture
  • Difficulties forming and sustaining friendships
  • Lack of seeking to share enjoyment, interest and activities with other people
  • Difficulties with social and emotional responsiveness

2. Impairment in communication
May include:

  • Delayed language development
  • Difficulties initiating and sustaining conversations
  • Stereotyped and repetitive use of language such as repeating phrases from television
  • Limited imaginative or make-believe play

3. Restricted and repetitive interests, activities and behaviours
May include:

  • Unusually intense or focused interests
  • Stereotyped and repetitive body movements such as hand flapping and spinning
  • Repetitive use of objects such as repeatedly flicking a doll’s eyes or lining up toys
  • Adherence to non-functional routines such as insisting on travelling the same route home each day

The diagnosis of autism changed with the release of the latest version of the Diagnostic and Statistical Manual of Mental Disorders (DSMV) in May 2013. The key change to the new manual for autism is that there is now a single diagnosis of autism, replacing the previous sub-divisions of autistim, Asperger’s Syndrome and pervasive developmental disorder – not otherwise specified (PDD-NOS).

Autism is now diagnosed in terms of its severity, with a ranking of 1, 2 or 3, depending on support needs. Diagnosis is now based on difficulties in two areas – deficits in social communication, and fixated interests and repetitive behaviours.


How is ASD diagnosed?

ASD is diagnosed through an assessment which includes observing and meeting with the individual, their family and service providers. Information is gathered regarding the individual’s strengths and difficulties, particularly in the areas of social interaction and communication as well as restricted and repetitive interests, activities and behaviours.

Such information may be obtained by administering standardised tests or questionnaires. ASD is usually diagnosed in early childhood, but assessments can be undertaken at any age. There is no single behaviour that indicates ASD. There are no blood tests that can detect ASD.

Developmental paediatricians, psychiatrists and psychologists with experience in assessing individuals with ASD are qualified to make a diagnosis. When making a diagnosis, the clinician will usually first determine whether an individual meets the criteria for autistic disorder.

What causes ASD?

Currently, there is no single known cause for ASD, however recent research has identified strong genetic links. ASD is not caused by an individual’s upbringing or their social circumstances or by environmental factors such as vaccination.

Is there a cure?

There is presently no known cure for ASD. However, early intervention, specialised education and structured support can help develop an individual’s skills. Every individual with ASD will make progress, although each individual’s progress will be different. Progress depends on a number of factors including the unique make up of the individual and the type and intensity of intervention. With the support of family, friends and service providers, individuals with ASD can achieve a good quality of life.

More Information

Feel free to check out this link which give a more personal view of our experiences with autism.

If you have any further questions about autism and how it affects families, feel free to send an email to, leave a question on the My Home Truths facebook page or contact me on twitter@MyHomeTruths.

9 Responses

  1. leigh says:

    Hi Kirsty .

    Dont know if ive come across you in my travels manning the Aut Supportline / ASDian people through Aut Support (non profit self help network, over 200 ASDians now from nine to ninety ), but good on your dad for the walk .
    I noticed the article in todays paper and wanted to bring your attention ( so maybe you can bring other peoples attention also to this?? ) that there are autistic people ( not people with autism , because we dont ” have ” our identities , ), OF ALL AGES INCLUDING GRANDPARENTS !!! who are stuggling to run their own support networks with NO financial or even voluntary backing from the government , unlike ASPECT who are funded millions of dollars , get proper funbd raisers happening with celebs etc , whilst refusing to have even one autistic person on their board of management , because , allegedly these positions are for “experts” , so i am told.

    If this situation happened with not one gay person or aboriginal person on a board of an organisation claiming to represent gay or aboriginal people ,all hell would break loose , but with autism , we are presented always as a child , maybe in order to tug at peoples heartstrings and i guess purses better .ITs as if we all drop end when we reachan age when we arent cute or objects of enough pity anymore )

    There are autistic people in our network who are professionals as well as ones on benefits , some live independently, some are psychiatrists , teachers , researchers at Unis , professors , electronic engineers (my partner ).
    Many of us still dont , to use your fathewrs words in the paper ” understand ” but its clear by the time one reaches the forties that its more to do with the way the world simply cant go on if it ever actually said what it meant and meant what it said .. and didnt lie or manipulate .
    Wendy Lawson , who is coming to speak at cessnock on the 9th august is a psychologist ,and is an ASDian , yet here is ASPECT using the excuse that the reason they dont allow any , even one token autistic on their board is that an autistic cannot be , anymore than a black person or gay person , an ” expert ” .

    The answer to the problem of difference is not normalising and modification of the difference, denial of its validity and non pathology ( behaviour interventions run by non asdians for asdian people ) but through open acknowledgement of the difference that will bring a sense of identity and pride and GENUINE belonging in a kinship or clan group that lets young ASDians see themselves reflected in those who are like , not always dissimilar to themselves.
    We hear about so called lack of social skills so much but how often do we ever hear of the apparently outrageous idea that ASDian people may just have their own social ways of relating that works with our own people . ??
    Any way , wont take up any more of your time . all the best with your walk , dads walk .

    Kind Regards, Leigh

  2. Ness says:

    I’m so glad your son is doing so well now.

    I received a diagnosis of Asperger’s Syndrome last year, at age 40! Sometimes I wonder if it would have helped knowing when I was young,but that’s the way it is for me. Now I have that understanding it made sense of a lot of issues that I’ve had.
    Ness recently posted..T’is The Season To Be Jolly…Worried

    • Kirsty says:

      I know a few people who suspect they are on the spectrum too, as adults. For some, the diagnosis would be crucial for self-acceptance, for others it wouldn’t make a difference as what’s done is done and at least they now know a bit more about themselves. I’m glad that it has helped you make sense of things and led to a positive outcome.

  3. Loki says:

    I have just come home from a bar where I was sat and had the two most obnoxious people on the table to my left who were talking about autism and how they “didnt believe in it” – I dont think I have ever been so annoyed but I managed to bite my tongue and not react to them. Reading this post has subsequently made me feel a little more enlightened while confirming my assumption that the people I was sat next to were both ignorant and stupid!
    Loki recently posted..Click here

  4. This blog deserves to be top, as it always shows news in its posts to us who follow it and to stay inside the news.

    Best regards

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