Monday, April 2, 2012

Aspergers - The road to diagnosis

Lighting it up Blue for Autism Awareness Month 2012, blog-hopping with Renee from About A Bugg raising awareness across the world for all who slip and slide along the Austism Spectrum Scale

From when our son was a toddler we knew there was something unusual about him.
He was loving to a select few people, he spoke in adult ways, he was pedantic about the organisation and structure of play with his toys. It was a fate worse than death for any person who was silly enough to park the little police car in the ambulance bay on his car mat. Lego building was a precise and time consuming activity as all colours had to match pictures and none other could be substituted. We watched the same episode of Thomas The tank engine over and over and he would have a full on melt down if I tried to change to a different episode. Playgroup was a nightmare with Jack crying and hitting out at other children.

We spoke to the clinic sisters and doctors. They insisted all was fine.

We brought home a baby girl and Jacks' dislike for her was immense. He threw Tonka trucks at her. Pinched, pulled, smacked and stomped on her. We could not leave them in the same room as each other. When he described our family she was left out. She did not exist.

We spoke to clinic sisters and doctors. They insisted all was fine.

When he started school he could not cope with playground energy. He spent most of his Prep playtime either crying on the Prep steps or sitting in timeout for not playing properly. In the classroom he gazed out the window and daydreamed. In diary writing he learnt to write 3 words. Look At Me. He wrote those words each day and drew a scratchy picture of a boy in black and red crayon. After a month of the same sentence his teacher told him she never wanted him to write that sentence again. He stopped writing. He stopped trying.

We spoke to doctors. They insisted all was fine.

From Grade One to Grade 3 he spent almost every playtime in detention as punishment for incomplete work. The cycle was endless and soul destroying. I asked teachers to stop punishing him and start praising and they agreed. They punished him anyway. He only ever used black and red to draw. He said the other colours hurt his hands. He would say "I'm not a nice little boy". He had night terrors. He was so lost. He had no friends. He struggled to read the most basic words. School reports were harsh. I started surfing the internet for answers. Again and agin I came back to Aspergers Syndrome.

We spoke to doctors. They INSISTED all was fine.

It was suggested the problems were ADD, that he needed medication, that it would be more convenient beneficial to try medication. We tried it. It helped with his aggression towards his sister. He became more withdrawn. He stopped eating properly and lost weight. He stopped asking his funny questions. His school work did not improve. He made 3 friends. He still spent almost every playtime in detention. We stopped the medication. Teachers were unhappy. I asked about Aspergers Syndrome and assessments were performed. Recommendations were made. The school did not turn the list of recommendations past the first page. It was a wad of 120 pages. Unread, Untried, Pointless. In his Year 6 exit parent teacher interview his teacher told him and us that unless he went to university he would not amount to anything. Told him that he'd never earn enough money to support himself. The man I married used every ounce of energy and restraint to not punch the teacher. I wish he had.

We spoke to doctors. They conceded that perhaps, maybe, there was a chance that all was not fine, but admonished me for wanting to label my child.

At his small high school, finally, someone noticed. Finally someone stopped punishing and started helping us find answers. At high school my darling boy was finally allowed to be his quirky self. At high school teachers were given strategies to engage him, to help him, to recognise impending meltdowns and to give him an escape. Not all teachers embraced it, but many did. Not all teachers gave a crap, but many did.

The Applied Learning teacher came with me to the Doctor. She advocated for our son. She confirmed all that we had been saying for so so long. She spoke about him in a positive light. She highlighted his strengths as well as his weaknesses. 
We sat before a panel describing our home life, describing the hell that was Jacks primary schooling. We described our methods of coping. We described a funny, intelligent and witty young man who saw the world differently. We described a young man who at first refused to learn how to drive as "based on statistics, the motor vehicle is the most deadly weapon of the 21st century" A young man who gave impromptu lectures to groups of school children at Seaworld on the migratory habits of sharks when we went there for a family holiday. A young man who on paper is so far below average but in person is bright and clever with a wicked memory. A young man who has friends, who will sit holding a kitten for hours just so it can sleep, who will play "Guess Who" with his littlest sister so I can get some study done. A young man who, despite all the negativity, is comfortable in his own skin, who likes himself and has a very clear career plan.
The panel deliberated and finally they came back and with gentle voices told us they believed he had a disorder known as Aspergers Syndrome. They offered us comfort and counselling.

We insisted ALL WAS FINE


  1. Just heartbreaking. I'm so glad at you persisted getting help for your boy despite probably feeling you were hitting your head against a brick wall.

    1. Hi E. Yes at times, many times it was heartbreaking, but we are also blessed to have this fantastic boy who makes my heart sing whenever I look at him. He is AWESOME!

  2. this was such a beautiful post - i know that sounds funny considering the heartbreak and pain you have obviously gone through, but your love and dedication to your precious child is so obvious and touching.

  3. It amazes me how alike our experiences can be in this community =)
    lotsa oxox

  4. Such a beautiful post about your boy.

  5. Such a beautiful post . I was so angry at those teachers and that school! Livid at his primary school years! Thank goodness for high school. Thank goodness for people like your son :) (and you!)

  6. Lisa, what a beautiful post, written with such love.
    I am sorry the school system and so called specialists failed your son and failed you.

    Thank goodness for an advocate for you and him.

    Beautiful writing.

  7. What an incredible story. I am stunned that it didn't get diagnosed till high school. I didn't know that would be possible. He sounds amazing, especially considering his rough start at primary school. Rachel x

    1. Possible and sadly common. We didn't tick all the boxes or they assessed in false circumstances. Assessing his general interaction with the world is unrealistic in a quiet room with his familiar Doctor, a friendly Psych and his Mum. It was a battle and not for the label, but for an answer and guidelines which others can use to help him! He is amazing. we are blessed xxx

  8. Thanks for sharing your story. I've been reading so much lately. I think the best tips and advice come from parents, not books.


  9. How amazingly frustrating for you and your family... but I am sad to say I know many like you.

    I am always inspired by your love for your boy and you are spot on when you say "it's a battle and not for a label, but for guidelines which others can use to help him!".

    And he sounds amazing. Much like his mum!

  10. Lisa, wow. A mother knows when things are not right. I feel so upset for your son's entire primary school experience, damage and punishment that I doubt can ever be undone. But the fact that your son still likes himself despite this is tribute to him and you (and your family and supporters). The time, patience and brick walls we endure are so exhausting. Your deep reserves of love and determination are inspiring. It was lovely to meet you, too. xoxo


Your comments are welcome, please be kind and respectful. We all have different views of the world, sharing your view with gentle words is Lisa