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What's next after 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

  • 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. Tony Attwood has a good approach outlined at:

    https://steinhardt.nyu.edu/scmsAdmin/media/users/al170/GellerPresentationwBG.pdf and others: www.amaze.org.au/uploads/2011/08/Fact-Sheet-Sharing-the-Diagnosis-of-Autism-Spectrum-Disorder-Aug-20111.pdf

  • Research your funding options eg Mental Health Plans, NDIS, local council grants,

  • Search the internet (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:

    • Read about Sharing the Diagnosis Fact Sheet

    • Seek advice from your support team

    • Finding someone who can support you while you explain your diagnosis

    • Find someone you trust who could speak on your behalf


I am a partner …

I would like to meet up with other partners

I would like to get support for myself and/or my partner

  • See our links to professionals (these links should specify whether they see couples)

  • Read about Asperger relationships:  www.durham-autism.org/partner-with-aspergers-syndrome/


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 (link) 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

Children

When First Diagnosed This is a video for those newly diagnosed:  https://youtu.be/2jot4xHt9P0

Social skills tips www.myaspergers.net/what-is-aspergers/podcast/twap008-would-you-like-help-finding-friends/(and link to our social skills page)

Late diagnosis

Anxiety


updated 31 January 2018

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Content copyright of Aspergers Victoria Inc.
Aspergers Victoria Inc is an Australian registered Charity with Deductible Gift Recipient status.

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54 Railway Road
Blackburn, VIC, 3130

ABN 47 066 180 983

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