Autism - our story

Angus was born in 2008 and he recently turned three. We ADORE our little boy. He has a sister, Tasmin, older by just 15 months. Angus was diagnosed with Autism in March, 2011.

When Angus was two and wasn't using words - at all - his Dad Ian and I become increasingly concerned. He'd met the important milestones of crawling, walking, and feeding himself. (In hindsight he avoided eye contact and was pretty much in his own little world, and used repetitive movements but like most parents we overlooked those). We took him to our paediatrician who suggested sight and hearing tests, and gave us a referral for a private assessment service. A local Early Intervention government worker provided an assessment of sorts in the meantime, through a trainee paediatrician, Angus was labelled with Global Developmental Delay. We could have opted for a free assessment at the hospital but I know from several other Mums that the waiting list is up to 14 months and we just couldn't wait. So at a cost of $800 we went for a private assessment.

I like to think it doesn't matter so much what you do with your child, more that you find a way to engage him with the world. The best thing we have tried so far is ABA (Applied Behavioural Analysis). We were fortunate to find out early about a free program offered by Flinders University's EIRP (Early Intervention Research Programme). The programme's director, Dr Robyn Young, has modified it slightly and they call it Systematic Behaviour Management. The idea is to train the parents to be the child's therapists, thereby saving a HUGE amount of money. I'm not exaggerating. It costs from $70 to $120 an hour for a private therapist. We are fortunate to have found a wonderful therapist who helps us on Saturdays, at home, for a two hour session at a cheaper rate.

This table-based therapy is aimed at children who haven't yet started their formal schooling, so at two or three years of age usually. Angus was two when he started. There are several categories covered, such as Eye Contact, Emotions, Expressive Labels, Verbal Imitation, fine motor, gross motor and several more. Ian and I attended a two week training course where we took the therapy ourselves by the end, and felt pretty confident. We've had ongoing contact with a great case manager too who has fine tuned the therapy and ironed out questions and issues for us. Click here to find out more about this therapy.

When we received the diagnosis for Angus in writing, Centrelink granted me a Carers Allowance of about $111 per fortnight. This is incredibly useful and we use it towards our grocery bill. We use online shopping for food and children's clothing, which attracts a delivery fee, but it's an option we find reduces a lot of stress.

I also joined Carers Support which has been extremely helpful for us. When I felt really overwhelmed at the beginning, they sent a wonderful carer trained in autism, who was an Autism Mum herself, to care for both children for an afternoon a week for three weeks to provide respite so I could attend to some research, and make phone calls, and sort out the paperwork, and have a cup of tea!

I found a wonderful support group purely by chance when I was Googling on the web one day. Quirky Kids is made up of a group of Autism mums and we meet twice a month - one Friday morning, and one Wednesday night at a cafe, to share stories, and seek advice. The best information I've had on this journey has been from other Mums and Dads. You can find us on Facebook - look for Quirky Kids Network. You need to request membership to join, and all comments are kept privately within the group. We are based in South Australia but have a member who lives in the U.S.

My number one go-to resource is actually a person, Temple Grandin. She's my absolute hero. She is incredibly intelligent, highly qualified, well thought of in her field and has Autism, which she views as a gift and wouldn't change. Look her up on You Tube and hear her speak. She gives lectures around the world on autism and encourages college students with autism to keep going with their studies. Reading her books at the start of my journey was the best thing - it gave me the bigger picture to work with, reassured me greatly about what was possible, and let me stay cool and get on with the job of being Angus's advocate.

I hope to post more later about some of our experiences, and add more resources. Please feel free to email me if you have any questions.
Last updated 7th January 2012.

1 comment:

Naomi Wilkey said...

Debbie, I love this! Well done. Naomi


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