Sunday 10 August 2014

How to Support Parents Post ASD Diagnosis - VAC 2014

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It is always a privilege being invited to speak at the Victorian Autism Conference. Having worked with the brilliant staff at Amaze previously it was good to see friendly faces again. 

Lia Castorina, Manager of Advisory & Counseling Services at Amaze, requested a presentation on how to support parents after a diagnosis of Autism Spectrum Disorder (ASD). In an effort to provide the best possible care for the child with autism, the parents are often forgotten and are the unsung heroes. 

As a Psychologist supporting children and families with autism at Psychology Melbourne, the following are the three most common areas of difficulty parents report post diagnosis.

Risk of depression
Dads-depression-increases-kids-risk-0VIIVDE-x-large.jpgDid you know that there is a significant risk of suffering from depression post diagnosis for your child? A study in Neuroscience (2013) found that depression and anxiety was significantly higher among parents of children with autism when compared with controls. 

Swinburne University had a poster at the conference expo which discovered that fathers experience significant psychological distress after their child is diagnosed with autism. 

To be clear, being a parent of a child with autism does NOT cause depression. But in an effort to provide the best possible care and support for the child it can leave a parent emotionally and psychically exhausted. Even the most capable person struggles. 

Strategies for coping with depression
  1. The first step is to identify and acknowledge the signs and symptoms of depression. Speak with your GP or check with reputable websites such as Beyond Blue for signs and symptoms. 
  2. See a psychologist. You are entitled to 10 sessions with a Mental Health Care Plan from the GP. 
  3. Your psychologist with first and foremost listen to your concerns/thoughts/worries. Never underestimate the power of being heard and listened to. Many clients leave the office saying, 'that felt so much better telling you all the things that I've been bottling up for ages!' 
  4. Your psychologist will empower you. Together you will co-construct new ways to at develop coping strategies that will work for you.
Risk of divorce and separation
There was a urban legend that 80% of relationships will end in separation/divorce after a child is diagnosed with autism. However, recent research has shown that it is not this high (Hartley et al 2010). Although it is recongised that having a child with autism does add extra strains on a relationship. 

Please check out Raising Children Network for a short clip of parents speaking about how a diagnosis impacted their relationship with their partner. 

Strategies for supporting your relationship with your partner:
  1. Open lines of communication. You may be at a different stages of the grief cycle to your partner but suffering in silence only makes it worse. 
  2. Avoid negative feedback loops that start with the accusatory "you" word -  'You always shout at me'. And replace it with an "I" statement. "I experience this shouting as upsetting and I'd like us to..."
  3. Establish new role. Often one parent has to give up full time work post diagnosis. How is this going to be managed? How can you work together as a team to adapt to this new way of being?
  4. Money is one of the top 5 reasons for separation and divorce regardless of whether a parent has a child with autism. The BBC recently reported that it cost the UK £32bn a year in terms of treatment, lost earnings, and care and support for children and adults with ASD. Amaze is there to help ease those financial burdens via the Helping Children with Autism Package. You are entitled to this money so please access this support. 
Risk of social isolation
It is often reported in the clinic by parents that family members not understand their child's autism, or friends have stopped coming over after a diagnosis. 
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This is a shame because this is the time when you most need support, care and understanding. 

Strategies for gaining social support:
  1. Start with something easy like a online forum. Dr Julie Green, Executive Director from Raising Children Network commented that parents have reported using online forums as a great way to 'dip your toe' into a new community and seek support while at the same time feel safe. Parents have reported to Julie how humbled they have felt by other parents good will and words of support and kindness on online forums.
  2. The next level would be to access support groups face to face. This is a good way to share thoughts and ideas with other parents going through the same issue. Parents often report that it normalises what they are going through by knowing someone who is experiencing a similar situation. Lyndell Kennedy, Director of Aspergers Victoria has reported great successes for parents joining Support Groups run by Aspergers Victoria. 
Having a  child diagnosed with autism is a life changing event. And all life changing events can bring stress and anxiety. But, it can also bring hope for a new way of being. When you are ready, build up the courage and access that support that is out there for you. 

Best wishes, 
Christina 

References:
Almansour MA1, Alateeq MA, Alzahrani MK, Algeffari MA, Alhomaidan HT (2013) Depression and anxiety among parents and caregivers of autistic spectral disorder children. Neurosciences, Jan;18(1):58-63.

Hartley SL1, Barker ET, Seltzer MM, Floyd F, Greenberg J, Orsmond G, Bolt D (2010) The relative risk and timing of divorce in families of children with an autism spectrum disorder. Journal of Family Psychology Aug;24(4):449-57