Autism: walking the parental tightrope
April 29 2017 10:39 PM
Dr Sreekumar, Clinical and Operations Manager, Qatar Institute for Speech and Hearing.

By Aney Mathew/Doha

Parenting while being a very rewarding experience is also one of the most challenging journeys.
Dealing with the ups and downs of everyday life is difficult enough, but having to deal with stressful situations as parents of a child with special needs, can be most demanding.
Autism is a life-long condition and the causes are unknown.
Children with autism or Autistic Spectrum Disorder (ASD) are affected in a variety of ways and to different degrees.
Receiving a diagnosis of autism can naturally be a shock for parents.
However in some cases it is actually received with a sense of relief, as it offers an explanation to some of the problems and situations the parents had noticed in their child.
There is no right or wrong way to feel when a family member is diagnosed with ASD.
Having a child with an ASD can be very stressful for the entire family, due to the needs or behaviours of the child.
This often results in tension for the individuals in the family, while also causing friction within relationships.
The important thing to remember is that both the child who has been diagnosed as well as the family members – especially the main caregiver – require tremendous support and plenty of encouragement.
“Being the parent of a child with special needs is undoubtedly very challenging.
ASD being a neurodevelopment disorder, the resulting situation is no exception; it can affect the psychological wellbeing of the parents”, says Dr Sreekumar, Clinical and Operations Manager, Qatar Institute for Speech and Hearing (QISH).
Speaking to Gulf Times, Dr Sreekumar who also serves as a Clinical Psychologist at QISH elucidates some of the problems faced by the parents of children with autism, while offering helpful advice on how to cope with the situation.
QISH is a multidisciplinary rehabilitation centre, catering to the needs of children and adults with various communicative and cognitive disorders; parenting services are also provided.
Parenting a child with ASD can be an exhausting and sometimes lonely journey.
Explaining some of the common challenges parents face as caregivers, Dr Sreekumar says, “Children with ASD or other special needs often require additional care in many areas such as diet, dressing, sleep, travelling, toileting, playing, body awareness etc.
These added requirements can put a lot of pressure on parents especially the mother and can often result in conflicts between spouses and family members; psychosomatic issues; and suicidal ideations.
“Thankfully these days more and more fathers are stepping in to take a more positive role with caregiving.
It is important to bear in mind that parents who have children with autism need strong support and help.”
The foundational step to facing the challenges ahead is to accept the diagnosis of the condition.
Many people tend to live in denial.
It is very important for parents to first of all come to terms with the fact the child has special needs and to accept the condition, without a sense of guilt or shame.
“Focusing on the emotional well-being of the child is fundamental and must be given priority.
Discussion with a psychologist is a must before starting any intervention.
It is also important that parents educate themselves well on the condition and the needs of the child and that they are very patient and tolerant.
Also remember what works well for one individual may not necessarily work well for another.
Similarly, seeking help from parent support groups and maintaining regular contact with professionals is both helpful and important; there are other parents who are going through a similar situation.
Working together and supporting each other makes the journey easier”, reminds Dr Sreekumar.
“It is also vital the family is involved in social activities. The main caregiver will benefit greatly from relaxation training, yoga, and medical management (if required)”, he advises.
Families sometimes break up when faced with such pressure and stress.
To help the family cope with the situation, family therapy sessions are advised.
Family intervention therapy and psycho education helps to divide the responsibilities between the parents more effectively, while helping them to communicate more openly, support each other, and gain a better understanding.
Educating oneself more on the condition and being an active part of society and engaging in social activities are all very important in the long journey ahead.
As primary caregivers, the parents especially the mother (in most cases), is usually overworked, tired and often sleep deprived.
It is therefore crucial that the psychological well being of the mother is taken care of.
With more and more children being diagnosed with autism, it is important that society takes an active role in helping these differently abled members.
It has a huge role to play in supporting not just children with autism and special needs, but to equally support parents and family members as well.
As Dr Sreekumar rightly puts it, “Psychological and emotional support must be extended to not just the children with autism or other special needs, but to their parents as well.
These families must be welcomed and encouraged to take part in social activities.
It is important to educate society on the needs of the people with special needs while supporting their families.
Education on mental health and the difficulties faced by people affected by such conditions helps in making people more empathetic and more sensitive to the requirements of those with special needs.
The taboo of social stigma can be broken through education and awareness.”

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