How to Support Parents Post ASD Diagnosis - VAC 2014

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
Did 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. 

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

Boosting your Brain Power

Boosting your Brain Power - the Hype and the Hope was a sold out public lecture held at the Melbourne Neuroscience Institute (28.05.13). ABC’s Hilary Harper skillfully chaired the evening and we heard from three leading experts: Professor Nicola Lautenschlager, Dr Bob Wood, Dr Damian Birney and Dr Jee Hyan Kim.

Context of the brain

Prof. Lautenschlager introduced the context of the brain. Studies show that by the age of 25 the majority of people have reached our cognitive peak. The knowledge, that brain function declines from in our twenties has peaked people’s interest.

Brain training industry

This could also explain why there is an exponential growth in the brain ‘training’ industry in the last five years (just google ‘brain training’ and you will see a plethora of companies). We have an aging population who want to preserve their well-being as much as possible. It is predicted that the younger generations will be retiring later in life, therefore being mentally (and physically) in  ‘good shape’ is essential for the potential demands of later life. Doing brain training exercises (for some people) is akin to going to the gym.

Prof. Wood reviewed the recent research into the brain training programs in the market. The main message was that these brain training activities are based on scientific research, but are over-stretching the claims made by the neuroscientists. He explained that although these programs are ‘evidence based’ they have not undergone the rigorous research protocols of academic research.

Criticism of brain training programs

One main criticism Prof. Wood put forward was that most brain training exercises do not account for motivation and attention, and lack thereof. In principle these brain training techniques might work, but people lack the motivation to engage in them for X amount of minutes every day.

Prof. Wood also postulated that the brain training exercises lack real life applicability. For example, how can doing Sudoku be generalised to everyday life? There may well be parallels but this needs to be studied further to understand the implications.

Active memory

Interestingly, Melbourne University, the Florey Institute and ABC have collaborated to create a brain training program that is a cut above the rest - Active Memory. As all good researchers know they are building on existing memory programs and learning from past mistakes. 

For example, they are using expert developers to create a program that is tantalizing and engaging to users. From professional experience one child (who had working memory difficulties) reported that he disliked his brain training program because ‘it doesn’t look any where near as good as my Xbox games! Why would I bother?!’ Using expert developers is important because the biggest criticism from children and adults who try to engage with existing brain training programs in the market are immediately turned off because it looks rudimentary in its design.

If you are interested in improving or sharpening your memory take a look at Active Memory. If you sign up you will secure exclusive and first time access to the program. It is currently in beta version and your participation will help improve and develop the program for the future.  

Parents' experiences of obtaining a diagnosis of autism: Training Amaze (Autism Victoria)

My experience meeting the team from Amaze 
Last week I had the pleasure of meeting and training the team at Amaze. Amaze (previously known at Autism Victoria) is a not-for-profit organisation dedicated to "improve the quality of life for people affected by Autism Spectrum Disorders (ASD), their family and carers." 

You would be forgiven thinking that Amaze had a staff of 100. Not only do they support

thousands of people in Victoria with autism, they run many fund raising events. This includes the successful World Autism Awareness Day in Melbourne which was attended by an estimated 4000 people in April 2013! This day also involved the Light It Up Blue International campaign. Fed Square, AAMI Park, Crown Casino, The Eureka Tower, The Arts Centre Tower and Hamer Hall were lit up blue blue to generate awareness about Autism Spectrum Disorder.

Are there 100 staff to accomplish all this great work? No, there are 26 people. So kudos to all the staff at Amaze who do a wonderful job supporting people with Autism in Victoria. 

A shared understanding

Amongst other topics covered within the morning training session, two issues in particular where addressed: 1. Parents' milestones obtaining an ASD diagnosis and 2. Solution Focused thinking. This blog post will focus on the former, and the latter will be a blog post written at a later date. 

Firstly, The team were encouraged to share their thoughts and feelings about their first experience with autism. This was an opportunity to engage in what parents are feeling when they telephone Amaze for advice and support. 

This activity evoked emotions ranging from: fear, worry, wonderment, anger, helplessness, laughter, anxiety relief to sadness. This mirrored the range of emotions parents experience when receiving a diagnosis of autism. 

Parents' experiences of the ASD diagnostic process: the milestones

At this juncture it was an opportunity to share my research on parents' experiences of the ASD diagnostic process in the UK. A mixed methods design was used comprising of collecting and analysing quantitative data on 800 children and qualitative data from interviewing parents who had experienced the diagnostic process. 

Below is an overview of the six milestones parents experience when obtaining a diagnosis. 

01. Pre-diagnosis phase

The initial milestone for parents is the pre-diagnosis phase. This is accompanied by parents not knowing what is 'wrong' and feelings of helpless and powerlessness. Parents also reported that co-morbidities (like language difficulties, sensory processing difficulties, developmental delays) clouded the issue and in some cases prolonged the diagnosis. This often caused frustrations for parents. 

02. Mixed emotions 

Parents described their mixed emotions once they received the diagnosis. On the one hand the diagnosis brought a sense of relief, but also feelings of fear and sadness. In some cases the experience of obtaining a diagnosis was traumatic for parents. 

03. Aspects of parenting

Parents spoke about the difficulty of parenting a child with autism. Many parents reflected that they needed to become a 'different' parent to their autistic child. Parents reported difficult emotions associated with parenting included guilt and anger. Some parents suffered from depression. Other parents found that family members freely gave advice and criticism of their parenting with little understanding of what is involved in bringing up a child with autism. 

04. Concerns for the future
It is true that many parents are worried about their child's future. However different types of concerns occupied a the mind of a parent with autism. Some parents worried if their child would be able to hold down a job, move out of home, have relationships. Interestingly, during periods of transition (a new year level, a different school, a new teacher, applying for exam dispensation) parents had to re-visit difficult emotions because they were reminded of their child's limitations. This suggests that there is a long term impact beyond the initial diagnosis. 

Summary
The general consensus amongst the staff at Amaze, is that they are dealing with much more than 'just' autism. Parents who have obtained a diagnosis of autism are feeling a range of difficult emotions. Some parents experience the diagnosis as a relief, others find it traumatic and upsetting. 

According to the statistics from the Australian Society for Autism Research the national average autism prevalence in school age children was 1 in 62.5 (date from June 2012). This highlights the importance of organisations like Amaze who provide support, knowledge and training for parents, schools and organisations. It also highlights the need for a better understanding of autism in schools, within families and society as a whole. 

To come....next blog post will be on Solution Focused Thinking: tools for tough conversations.  

Impact of moving a 3 year old overseas without Dad

Presenting problem

A 3 year old was referred to gain insight into the potential impact of moving overseas with the mother, leaving the father behind in the country of origin. It was made clear that my role as a psychologist was not to decide whether the 3 year old should go overseas, but rather to provide a psychological perspective so parents could make an informed decision about their family’s future. The child’s parents had separated amicably one year ago.

Research

A literature search was carried out to look at the impacts upon children moving overseas. It felt appropriate to look into the impact of divorce/separation as well as an overseas relocation because they both involve a loss, whether that includes the loss of how life used to be, or the loss of not being able to see a main caregiver regularly.

What does the research say about the impact of divorce?

Several common themes have emerged in the divorce literature:

• The immediate aftermath of parental divorce is often a period of emotional distress for both parents and children (Hetherington, 1993; Hetherington & Elmore, 2003). Sometimes emotional problems including anxiety, depression, anger, guilt, and resentment, may be temporarily evidenced (e.g., Amato, 2000; Hetherington & Elmore, 2003; Wallerstein, 1986, 1987, 1989).
• As the family adjusts to the post-divorce situation, parenting ability generally improves with time, thereby improving the overall family dynamic (Hetherington & Elmore, 2003; Richards & Schmiege, 1993).
• Children can sometimes develop behavioural problems following their parents’ divorce/separation, such as aggression, non-compliance, delinquency, low academic performance, and low self-control (e.g., Hetherington, 1993; Hetherington, Bridges, & Insabella, 1998; Hetherington & Elmore, 2003; Wallerstein 1986, 1987, 1989). Although this will depend upon the protective factors afforded to the child.

What are the protective factors?

The healthy adjustment of children, therefore, is contingent upon the existence of protective factors, including:

• Cooperative parenting (Hetherington & Elmore, 2003; Lowery, 1985; Sorenson & Goldman, 1990; Wallerstein, 1991; Warshak, 1992).
• Meaningful relationships with parental figures (e.g., Hetherington & Stanley-Hagan, 2000; Kelly & Lamb, 2003; Wallerstein, 1991a).
• Stable social supports within the home (e.g., Hetherington & Elmore, 2003; Jameson, Ehrenberg, & Hunter, 1997; Wallerstein, 1989, 1991).
• Positive community environments (Hetherington, 1989; Hetherington, 1993; Hetherington et al., 1993; O’Connor, Hetherington, & Reiss, 1998; Rutter, 1979).

Resilience

Resilience is a key factor in a child’s ability to adapt to the separation and divorce of their parents and research has placed attention on positive factors that will enhance children’s resiliency and decrease maladaptive and negative outcomes (Chen and George, 2005).

Children’s resilience can be developed and cultivated by the positive action of the adults, and by the reduction of risk factors (Pedro-Carroll, 2005). Factors that support children's adjustment include parental cooperation (Whiteside, 2000), parents' adjustment and mental health (Kelly, 2000), stable financial circumstances (Amato, 2000), and a supportive social and familial safety net (Buchanan, Maccoby, and Dornbusch, 1996).

Attachment theory

According to attachment theory, children need continued interaction with parental figures to form meaningful emotional relationships, which have considerable impact on a child’s long-term development.

What is a secure attachment?

Children who are positively attached are confident in the responsiveness of their parents’ care, and are able to explore their world knowing the parent is available when needed (DeHart, Sroufe, & Cooper, 2000). Such relationships are promoted through periods of interaction whereby feelings of closeness result in stronger emotional involvements between parent and child (Furstenberg & Nord, 1985). The formation of parent-child attachment, however, is considerably dependent upon the child’s age and stage of development.

After 2 years of age

• Children may engage in meaningful communication with parental figures and refer to internalized images when caregivers are absent (Kelly & Lamb, 2003).      
• Older children tolerate more extended separations with less stress than younger children, provided meaningful contact is regularly maintained (Maccoby et al., 1993).
• Short-term visitation with the father does not harm attachment relationships with the mother (Bray, 1991).

The research suggests that early emotional bonds have considerable impact on subsequent social adjustment, regardless of whether the child lives in a single or two-parent home.

Why are paternal relationships so important?

Fatherly involvement is strongly correlated with children’s psychological and behavioural adjustment in the short and long term (Pruett, Williams, Insabella, & Little, 2003; Rohner & Veneziano, 2001). Active involvement by fathers in their children’s lives fosters positive psychological development by helping protect against:

•  Social withdrawal
•  Aggression
•  Conduct problems
•  Anxiety
•  Depression (Rohner & Veneziano, 2001)

In addition to the buffering influence fathers may have on their young and adolescent children (Amato & Rivera, 1999), paternal involvement offers unique benefits to children that only a positive father-child relationship may provide. Such important fatherly contributions include:

•  Academic achievement
•  Higher self-esteem
•  Improved socialization (Amato & Gilbreth, 1999)

It is important to note, however, that only those fathers who actively engage meaningfully in their children’s live exert a positive developmental influence (Amato & Gilbreth, 1999).

Impact of Parental Absence

Research indicates that children who do not see their parents on a frequent or regular basis may feel intensely disconnected and rejected (Emery, 2004; Grief, 1997; Wallerstein, 1987), which increases these children’s risk for developing a variety of psychological and behavioural problems following divorce (Hetherington et al., 1998; Kelly & Lamb, 2000; Ross, Roberts, & Scott, 1998b; Whiteside & Becker, 2000).

How do children of different ages respond to parental absence?

• Infants may cry, fuss, or pull away once reunited with an absent parent, while toddlers may demand more personal attention by exhibiting clinging or regressive behaviour (Anasuri, 2001)
• Older children are more likely to feel guilty or anxious about their parent’s absence, perhaps angry that the parent has been away while at the same time afraid that the parent will never return (Anasuri, 2001)
• Teenagers may tend to pull away from the absent parent, preferring to spend time with friends, or may challenge that parent’s authority and limits (Anasuri, 2001)

However, it is the quality rather than the frequency of contact that is considered most important (Hetherington et al., 1998). A study conducted by Maccoby et al. (1993) confirms this assertion, indicating that while closeness with a parent depends upon face-to-face interaction (Hetherington & Stanley-Hagan, 2000; Warshak, 1992), “even a fairly small amount of contact [appears] sufficient to maintain close relationships” (p. 32).

How can the impact be reduced?

Parents need to plan for maintaining relationships with their children in light of potential relocation (Weissman, 1994), including how to engage meaningfully with their child through:

•     Telephone/Skype calls
•      E-mail
•      Hand-written letters
•      Pictures
•      Audio and video recordings
•      Send postcards from a smart phone using apps like: http://www.touchnote.com/

Absent parents may also stay in touch with their children by:

• Sending token presents that say, “I’m thinking of you”
• Completing crafts that are sent back and forth
• Engaging in a distance ritual at the same time, such as reading a book over the phone
• Anything that brings parent and child closer together on an emotional level.

How a child responds to parental separation also depends on the at-home parent’s response to the situation (Anasuri, 2001). If the residential parent is eager to assist both parent and child maintain active involvement with each other, relocation may be a more viable option. If, however, the custodial parent is hesitant to facilitate, it may be far more difficult to assume meaningful contact would continue following a change of geographic residence, and thus more difficult to recommend that moving is in the child’s best interests.

Families needs to think about:

• How important is this move to the parents?
• Are there pros as well as cons for the child?
• How can the child maintain a relationship with parent, family left at home?
• What is the child's personality like; in particular how do they cope with change?

Clinical summary

Relocating with children is stressful and invariably involves an adjustment. However, in cases where there are no extenuating circumstances, most children who relocate do well after an initial transition. In fact, more often than not, moving becomes an opportunity for growth rather than a burden once the original adjustment is made. 

For families where parents are separated or divorced, however, relocation can be traumatic for both child and parents. The loss involved in moving always is profound when it means losing not only extended family but also a parent. The two main questions that parents need to consider are 1) how can we minimising the disturbance to the child and 2) is this relocation in the child’s best interest? Ultimately the decision needs to be made by parents themselves but it is hoped that the above information can help to inform their decision making process.

References

Contact me for full reference list – it’s too long for a blog.