Parenting a child with autism spectrum disorder (ASD) is stressful. Diagnosis is an emotional time; identifying a treatment plan takes an immense amount of research; executing that plan takes 25+ hours a week of hands-on organisational time; monitoring the child’s progress is intensive and emotionally draining. In between all of that activity, parents are trying to find time for their other kids, their jobs, their friends, a date night, and important family commitments. They are incredible people, and likely incredibly exhausted.
Ironically, high levels of parental stress create problems for all families and even more so for families whose children have ASD. It’s imperative parents build a strong support network and look after their own mental health. But where to start? Playtimes spoke with Dr Ghazi Kaddouh, a clinical psychologist and director at SIO Psychology and Consulting in Central, for some guidance on how parents can tackle these disorders.
The grief of diagnosis
Receiving an ASD diagnosis can be a long road, or it can blind-side parents. Either way, it’s a stressful and emotionally charged time. Many parents talk about the grief of diagnosis. It’s naturally a time when some parents feel a loss. Some parents feel the life they dreamed for their child may no longer be possible. The reality of coping with symptoms, care and treatment options are sobering and can also place a lot of financial pressure on families.
Dr Ghazi acknowledges the experience of diagnosis will be very different for each parent. Some may even deny the diagnosis. But what all parents share as common ground is the need to equip themselves with the skills that are not only necessary to cope with the challenging behaviours of their kids but also to help these beautiful and deserving children to learn their own skills and coping strategies.
The first step is acknowledgement, he says. “There is a lot of stress. There can be a sense of loss, parents also have anxiety and stress about their child not succeeding.” Acknowledging these feelings and the experience the parent is going through is important. “Acknowledgement comes from many people – friends, your partner, psychologists. The demands of a child with symptoms can be physically exhausting. Monitoring the child’s actions and symptoms can be psychologically exhausting.”
Through this challenging reality, Dr Ghazi says there’s not only hope, but a lot of love to give and possibilities to attain. He urges parents to realise, “It doesn’t need to be a loss.” He continues, “Once you learn techniques and strategies, it can be a win-win situation for kids and parents. There are things we can do to help – certain things parents can learn. But before we can go to these new skills, we have to acknowledge the impact on parents.”
He says that one of the first steps is to learn about developmental disorders. He says, “Start to learn what ASD, ADHD, and other disorders such as ‘Oppositional Defiant Disorder’ are.’ Why do I suggest that? So parents don’t feel guilty. They must understand – it is not your fault. Once they have begun to learn about the diagnosis, then I know it’s time for them to learn relevant skills.”
Why is all this so important? What happens if Mum and Dad just soldier on? Dr Ghazi warns, “Treatment begins with the adults – if your parenting is inconsistent, you’re freaked out, worried, or you’re micro-managing, your child can’t thrive. Providing love, structure, empowerment and a consistent home environment where Mum and Dad are on the same page, with clear and simple rules – this is where you need to be. Work towards this and your family will get to a point where there is less stress and more relief.”
Impact on marriage
“Nothing threatens children more than a conflictual relationship between Mum and Dad,” Dr Ghazi says. Understandably, kids who have symptoms of these disorders place a lot of stress on a marriage. With this in mind, Dr Ghazi recommends parents continue to actively work on their marriage.
Communication is key. Taking time to tell each other about your experience, to validate each other’s feelings without being defensive, is important. Finding time to be alone as an individual works double time to give parents a break from family life and maintain their sense of identity within their marriage.
Fostering a true partnership and respecting the ebb and flow of that support system helps couples thrive. “If one of the partners is in distress – the other’s emotions and needs need to take a back seat. Again, the key is to listen and validate your partner’s feelings,” says Dr Ghazi.
Mums often feel the full force of being the primary care giver and ‘mission control’ for treatments. Dr Ghazi urges dads to have empathy for this enormous role, for its physical and emotional trials. Without acknowledgement and validation, mums can become resentful and problems brew.
He also suggests husbands stay curious in their discussions with their wives. “Dads need to have curiosity when their wife shares her troubles. Rather than saying ‘don’t be stressed’, which may be perceived as invalidating her feelings, he can ask her for more information around what is driving that feeling.”
Siblings often play a vital role in the treatment and day-to-day lives of ASD kids. They can provide a safe harbour and be a powerful social ally in a world that’s overwhelming and often frightening. Just like parents, siblings also experience the fatigue of this role. It’s important we stop and take some time to understand the impact of the disorder on the siblings.
The reality is that siblings can see their needs take a back seat over that of the child whose symptoms overtake the time and energy of the whole household. While every parent will try their best to manage this, it’s not always a reality to ensure all children are getting the time and attention they need. This can create tension, jealousy, and even animosity between siblings, for such young kids can feel that they matter less to their parents and they are less important. Dr Ghazi confirms, “In families with children with special needs, the parents’ main energy is taken by the child with the disorder. The other children may feel marginalised.”
Despite the challenges, sibling love is still strong. Dr Ghazi talks about this special bond and the role siblings of kids with developmental disorders play. “Their love for their sibling is a complex love, it’s mixed with jealousy and resentment. Children find it hard to express how they feel. When they’re dealing with big feelings like jealousy and resentment, they may hold that inside and sulk. This can affect the whole dynamic of a family.”
One of the most common challenges parents face is validating the feelings of those siblings. Dr Ghazi says, “They know their brother or sister with special needs requires more help and more resources, but hearing a parent say one child needs them more than another invalidates their feelings. We can be clear about the level of help each child requires without comparing by saying something like, “I love you. I don’t love you less, it’s a different type of interaction with your brother/sister”.
So how do we help siblings of a child with such disorders? Dr Ghazi shares that one-on-one time becomes a must-do. Managing this can be tricky, and that’s where dads really come into their own. While Mum is likely shuttling her ASD child around to various therapy sessions and doctor’s appointments, Dad has the opportunity to step in and spend more one-on-one time with the other kids. He must then also swap with Mum to give her the bandwidth to have her own time with each child.
Dr Ghazi suggests, “Ask them, ‘What would you like to do?’ Some activities should be followed with some one-on-one time whenever possible. Always after a playdate or sleepover, give them some one-on-one time to talk about themselves and their experience.”
As well as supporting their children, it’s important for parents to support each other but also to seek additional support for themselves. For many Hong Kong families, this comes in the form of a helper. Helpers play an important role in the lives of ASD families – they provide support for parents and they’ll likely spend time with the ASD child. Dr David Fischer from Autism Partnership shares the importance of including a helper in the treatment plan created by a family. He says, “Our parent training is compulsory. Those trainings can include a family’s helper. They are more than welcome and they’ve joined many training sessions.”
That may seem like a big ask, but it’s incredibly important for the child. “Helpers have a lot of facetime with the children we see, and certainly if they are doing things in a way that is not going to maximise the child’s potential, that’s an inefficiency in your system. We want to help our helpers as much as we can,” says Dr Fischer.
This additional expectation makes it important for ASD families to hire the right person. Dr Fischer notes that it can be tough to find a helper with relevant experience, but he shares some advice for parents who are hiring. “It’s a challenge to find a helper who is particularly talented in this way, it can be the luck of the draw. Look for someone who is caring, patient, a little more energetic. Maybe even a bit on the youthful side – I say that because in my own life I used to have more energy than I do now. A youthful attitude is a good thing for families.”
There is no doubt that having a child with ASD can present additional stresses and strains for a family, and that each family member will need support, whether that be practical or emotional support. For an ASD family, seeking out that support as soon as possible is a necessity, not a luxury.
Read Part 1 Autism: The Facts
Read Part 2 Autism: The Treatments
Try these useful contacts for further information about autism treatments in Hong Kong.
- Autism Partnership
- Autism Recovery Network
- Bridge Academy
- Child Development Centre
- Child Development Team at Central Health Partners (www.centralhealth.com.hk)
- Heep Hong Society
- Hong Kong Government Child Assessment Services
- New Page Learning & Developmental Consultants (www.newpage.hk/eng)
- Rainbow Project
- Sprout in Motion