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Tuesday 4 November 2014

Guest Post by Sarah Jane: If You Read One Thing Today, Let This Be it...

Please note that this is a guest post written by a long-time follower of my blog and Autism Bubble Facebook page. "Sarah Jane" is an Australian mother of two. Her eight year old is autistic and this post is a beautiful letter she drafted to her loved ones to share the news of her second child's diagnosis. I hope you appreciate it as much as I did. -The Autism Bubble   

If you read one thing today, let this be it.... 

This is Christoph*. He is four next weekend. Today I received a phone call, and a few hours later a printed letter that confirmed what has long been known; that Christoph is on the Autism Spectrum. The letter clearly states that Christoph meets the DSM-5 criteria for Autism Spectrum Disorder (ASD). Now, before any of you post anything to say ‘I’m sorry’ or ‘I’m sure he’s not that bad’ or ‘maybe they got it wrong’ or any other well meaning, yet clearly misguided comment,please read on and take in the rest of what I am about to say.

In 2012 Christoph was identified as having a sensory processing disorder and today was diagnosed as ASD ‘severity level Moderate’ (level2). This means it is anticipated that he needs ongoing support of a “substantial” nature. This hasn’t changed since yesterday, and has been the case with Christoph for a long time. The difference, however, is that now he has access to services he was unable to access before. In Australia we are blessed with an early intervention program for ASD and today I signed paperwork to gain him access to this program. This program means Christoph can access evidence based practice services such as Occupational and Speech therapy and Psychological services, up to a set amount, to be used before he turns seven.

I signed another form allowing Early Childhood Australia to be notified about Christoph so that the process can start to see if he can gain access to additional support through school to give him the best chance at receiving an equal education. I was given yet another book on autism (one I haven’t read!)and the lovely support of our local Autism Advisor staff.

On top of Christoph getting a better chance in life because of this diagnosis he will grow up knowing he has autism. He will grow up knowing it’s okay, and he will be taught the skills by myself, family, friends and professionals to accept himself for who he is, yet strive to be even better. He WILL develop a healthy sense of self and identity that includes his autism because it is a part of him. It doesn’t define WHO he is, but it does define PART of what his behaviour or mannerisms are as a result of his neurology and subsequent cognitions.

Christoph will continue to have intensive sensory based interventions at home including the use of our sensory based play area, cloud swing, hammocks and regular runs and walks. He will continue to use visual supports, scripts, and social stories to develop his independence in brushing his teeth, dressing and other daily tasks. He will continue to have (for the most part) my patience as he takes six months to adjust to the idea of new shoes or a change in structure or routine. Christoph will continue to sleep with his companion dog Crystal who has helped him develop his speech and assisted him to learn skills in calming, and self-regulation. He will continue to have ‘thinking time’ when he behaves inappropriately and he will continue to be given the tools he needs during this time to assist him to calm and refocus. He will continue to be taught to think about thinking, about self-awareness and mindfulness. He will continue to be encouraged to try a new food that, on the first occasion makes him gag. He will continue to be rewarded with stickers when he tries something new, regulates his behaviour or any other number or reward worthy acts. He will continue to learn social skills through daily interactions where he is explicitly taught the ‘rules’ that so many others his age can infer. Christoph will continue to grow. He will continue to develop. He will continue to have support to achieve his potential.

The diagnostic pathway is long (Christoph was initially referred at 20 months old) and for over two years he has seen countless professionals and had multiple assessments for different aspects of his behaviour. It is exhausting, but it has been worth it. With the additional support of some brilliant professionals we are thankful to have up here, I am sure methods of teaching and accommodating Christoph can continue to be refined and improved.

I contemplated a facebook post for some time before I wrote this and my reason for deciding to do it is simple. AWARENESS. I am NOT posting this for ‘sympathy’ because, frankly, there is NO need for it. This is a CELEBRATION of acknowledging a part of Christoph, as you would acknowledge part of someone’s heritage or culture.

I want to thank all of those around me, especially my mum,as well as the rest of my family and friends that have supported me on this journey, attended appointments with me, or learnt along the way with me. You all mean the world to me and I truly thank you for what you have contributed for Christoph. 

This post is not designed for any other purpose than to create a bit of awareness and let people know we got there. After years of appointments, we got there. We advocated for Christoph, we repeated countless times his ‘limitations’ and we ached nearly every time. BUT we got there, and now,now Christoph can soar. So please don’t just scroll past because it makes you uncomfortable to think of someone with special needs. Don’t discount the hard work that got us to this point today.

Gain from this a little bit of awareness, understanding, or something. Share the story with a friend, speak about autism with a colleague. Raise a little bit of awareness yourself.Because the more people that know about autism- and foster acceptance, the easier it will be for Christoph to grow up knowing it really is okay. Let us embrace this ‘label’ and normalise it, come out to the world and de-stigmatise autism.For the sake of those with autism both children and adults alike.

Let us accept neurodiversity.

Thank you

XXXXXX

*Names have been changed 

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