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Just Diagnosed?

If you have just had a positive diagnosis...

So you have just been advised you have an Aspergers diagnosis. This can often give you a mix of

  • Relief - maybe you knew your brain or your child’s brain worked differently and that was finally confirmed
  • Denial or disbelief - wanting to believe you have what some call a “normal” thinking approach
  • Anger - that it was likely difficult to get this diagnosis either with long wait times or people telling no you couldn’t possibly have Aspergers or autism, or maybe you were misdiagnosed earlier
  • Excitement - that you have such an amazing neurology and that now you can work out which tools can help you harness what you can really do
  • Fear - as is common with the unknown and what it means

So…what next?

Firstly for anyone : Ask the team who diagnosed you to give you an outline of what this diagnosis means. Request an plain English outline and explanation of what are your/your child’s/partner’s key strengths and main areas where support is likely needed - if any.  They may give you diagnostic reports but request they outline these specifics further for you. Also any local organisations and professionals they suggest for you.

For the list of various Aspergers strengths and challenges visit our What is Aspergers page. Each Asperger is different in how their Aspergers affects their life. You have many other characteristics, traits, personality and features that add up to create who you are.

Don’t let Aspergers be all that defines you/your child - or let a diagnosis hold you or them back. It is not necessarily a disability but rather a difference or a “diffability”. We like to call it neurodiversity.

You may need various types of supports and tools to understand yourself and your strengths and challenges. The team who support Aspergers, depending on your needs, include:

  • Aspergers Victoria with our focused expertise in Aspergers, groups and peer supports
  • Professionals with experience in Aspergers:
  • Psychologists or psychiatrists: various techniques available including CBT, ACT
  • Occupational Therapists: sensory and movement needs
  • Speech Therapists: language use especially pragmatics and social skills
  • Personal Trainers: exercise and co-ordination

See our link to  professionals who have been recommended by your peer community. You need to work out what supports help you/your child. Aspergers Victoria only recommends you use evidence-based tools and approaches.

It is important to discover your strengths and build on these together with special interests to build motivation and self esteem. It is also important for your wellbeing to include exercise and other anxiety management tools in your toolkit.  

I am a parent

I need to learn more!

  • Join Aspergers Victoria - we have a wealth of articles on various topics AV members can access in our members’ only website. As a member you can contact our Information team with queries
  • Read as much as you can, such as Tony Attwood’s ‘Asperger Syndrome: A Guide for Parents & Professionals’ www.tonyattwood.com.au and watch this clip about what kids wish you knew about Aspergers: 
  • Talk to your child’s school about organising their education support plan - and funding: (IEPs:www.education.vic.gov.au/school/teachers/health/Pages/oohcedplans.aspx)
You will need to decide how you tell your child. Some sites to help include: 
  • From Chavisory's Notebook "You Should Tell Your Kids That They're Autistic." - why it's so important for kids to know more about themselves, written by an autistic adult. https://chavisory.wo...tell-your-kid…/
  • Blogger Jennifer Roberts Bittner, "The Talk: How I Explained My Son's Autism Diagnosis To Him:"
  • Stephen Shore, an autistic adult & educator, offers guidance to parents in this video, "Should You Tell Your Child About His/Her Autism Diagnosis?"
  • From Child Mind Institute
  • Research your funding options eg Mental Health Plans, NDIS, local council grants,
  • Search the internet about Aspergers (be discerning)!
  • Discover the best way your child likes to learn to socialise and encourage them to build those skills. This could involve play dates or joining scouts or a Club, sport, and an AV peer group (link).
  • I would like to meet other parents of Aspergers kids
  • Join one of our AV support groups.
  • Attend as many AV information events as you feel you need to (details in our AV newsletter & on our website)

I am an adult

  • I would like to meet up with other Aspergers
  • Join Aspergers Victoria - come to our monthly  AS adults meeting
  • Try to join a group or club which shares your special interests or builds on your strengths
  • I would like to have support and advice
  • See our webpage with links to professionals
  • Join AV and as a member you can contact our Information team with queries
  • I would like to tell my friends/family/colleagues/manager
  • Some suggestions include:
  • Seek advice from your support team

I am a partner …

My child/I want to know more about Aspergers

For younger kids, "Professor Puppet: Autism Explained For Kids" (2 minute video) https://www.youtube....h?v=DrrXMO-NrCM and the Arthur cartoon a popular YouTube excerpt for kids about Aspergers.

From an autistic young woman Amethyst Schaber, who has a video series called “Ask An Autistic,” - "What Is Autism?". This video is helpful for older kids & teens and adults.
https://www.youtube....h?v=Vju1EbVVgP8

The TED talk by Rosie from 2013, "How Autism Freed Me To Be Myself," which has lots of views here: https://www.ted.com/...reed_me_to_be_…

The Arlington, Virginia Public School System put together this guide in 2012 "How To Talk To Your Kids About Having ASD:" http://www.apsva.us/...our_child_abou…

The Thinking Person's Guide to Autism has an awesome resource list of books, blogs, etc. that can be found here with FB page http://www.thinkinga.../resources.html

Are there disadvantages to a diagnosis?

Most believe understanding your neurodiversity gives you an opportunity for self empowerment. This can be a journey, and it can be difficult to build understanding and acceptance, which is a key objective of Aspergers Victoria’s advocacy. However Kenneth Roberson outlines some of the pitfalls of disclosing diagnosis that you will need to manage:

“Having Aspergers is not exactly fun. People tend to think in stereotypes, and the word Aspergers often conjures up the image of an awkward, quiet, anti-social loner. It’s unfortunate but true.

A diagnosis gives others the ability to pigeonhole someone and make assumptions about the person based on their understanding of the diagnosis rather than what’s true about that condition.

Along with those assumptions go certain unfortunate reactions, like assuming you’re just like everybody else and that you’re only pretending to be different, that you don’t need certain accommodations, or that you’re using Aspergers as an excuse not to follow through with your responsibilities. I’ve seen many of these unfortunate reactions in my practice as an Asperger’s psychologist. “source: www.kennethrobersonphd.com/ive-just-been-diagnosed-with-adult-aspergers-now-what

I want more information . . .

We hope you join our community by becoming a member to discover the benefits of peer support. You can contact our Information team at help@aspergersvic.org.au

Other Useful Links:

More about Neurodiversity: www.durham-autism.org/celebrating-neurodiversity

Autism: Amaze (Autism Victoria) has a 24 page booklet on ASDs, designed as a starting point for families and individuals. You can download a copy from their website resources page here www.amaze.org.au/discover/about-autism-spectrum-disorders/resources


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