Autism: The Child And The Parents
The current diagnostic and statistical manual for mental disorders (DSM V) defines autism as having ‘persistent deficits in social communication and social interaction across multiple contexts, as manifested by deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or effect; to failure to initiate or respond to social interactions, deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication, deficits in developing, maintaining, and understanding relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers, currently or by history.’
It is important to note, however, that differences occur in the severity of symptoms and though the communicative and social difficulties may be similar amongst a range of patients, there are significant and distinct differences that affect the later years of these individuals.
Autism Spectrum Disorder: The Psychology Of A Child
Understanding the psychological aspect of autism spectrum disorder is extremely crucial to gain a complete understanding of the situation. By just being aware of the signs and symptoms we may not be able to understand the impact of the symptoms and behaviors being exhibited. What the autistic child is going through, both mentally and physically, contributes to his/her illness and unless we increase our knowledge at all levels, the treatment will not work.
Because the autistic child suffers from communicative and social difficulties, daily social interaction between people ends up being very challenging. Many sufferers have claimed that they have ended up offending the people around them by saying something they did not like, without knowing what it is that they said to offend the other person.
As the autistic child tends to stand out from the rest of the children in school, he/she is more susceptible and vulnerable to bullying. The first reaction that the child will have in such circumstances is of anger. They feel rejected and unwanted and thus tend to react.
A report published by Kennedy Krieger Institute’s Interactive Autism Network (IAN), which is the largest online autism research initiative, showed that ‘children with ASD are bullied at a very high rate (63% of 1,167 children with ASD, ranging from ages 6-15, had been bullied sometime or the other in their lives), and are also often intentionally “triggered” into meltdowns or aggressive outbursts by ill-intentioned peers’. Their resulting behavior can prove to be dangerous for other family members, particularly their siblings.
Interestingly, the report also goes on to say that ‘children with autism may also behave as bullies. Around 20% of parents with ASD reported that their child had bullied others.’
Many also have difficulty sleeping at night and eat only a limited range of food. A study by the UC Davis Mind Institute discovered that ASD children woke up in the middle of the night notably many times more as compared to typically developing children.
Developmental Behavioral Disability Affecting The Emotional Well-Being
The developmental behavioral disability that the child is suffering from also impacts his/her mental health and has a serious effect on their social and emotional well being. They know and are aware of their difficulties and understand that they are different and this in turn results in low self-esteem and immense sadness.
Often referred to as ‘late bloomers’ by the society and ‘constitutional delay’ by doctors, late bloomers suffer from hormone deficiencies.
The earlier the intervention in this case, the better. If a suspicion arises where the child doesn’t interact with the rest of the family or doesn’t respond to certain cues and the environment, it is essential to look into this issue immediately and not wait for it to worsen.
When the individual leaves childhood and enters adulthood, communication difficulties tend to increase and this period can be nerve wrecking. Susan Parish, the Brandeis professor of disability policy, says, ‘The transition from high school into the adult world “is often catastrophic” for young people and their families.’
As they do not always have someone guiding them every step of the way, social interactions can cause numerous problems. It is important at this point to get these individuals the necessary help by enrolling them in programs which help them develop their social skills and provide training. Clinical Psychologist, Elizabeth Laugeson of UCLA, recruited 17 young adults, all diagnosed with ASD, and helped them understand concrete rules of social behavior.
Autism: The Parent’s Behavior
The stress that comes with autism spectrum disorder doesn’t just lie on the individual suffering from it but also the caregivers, parents and siblings taking care of him. A study done by Sams J, Billen, Roberson, P&Bluth, K (2013) revealed that parents of children with autism spectrum disorders (ASD) are at an increased risk for acute and chronic stress in comparison with parents of children without disabilities.
A prospective study conducted in Kuwait in 2013 also compared results of mothers with autistic children and without, revealing that mothers of autistic children suffered from depression at a scale of 32.3% compared to the control group (mothers without autistic children) which revealed 10% of mothers suffering from depression. 41.5% with autistic children had dysphoria compared to only 16%.
These results could be due to numerous reasons, many a time the first few months after the birth of the child are normal and the child starts to regress after 18-24 months have passed away.
This is harder for the parents as they had their own expectation of what they wanted from the child or were looking forward to in terms of his future. The mothers also have a tendency at this point to start feeling guilty and end up blaming themselves for what must have gone wrong, either related to their pregnancy or at home.
Many feel ‘grief’ as they don’t have the normal experience of bringing up a child and almost feel as if they have lost a loved one. Worthington (1994) reveals that ‘parents of children with developmental disabilities experience episodes of grief throughout the lifecycle as different events (birthdays, holidays etc) trigger grief reactions’.
Dr Pamela Compart who specialises in Developmental Behavioral Pediatrics and co-author of The Kid-Friendly ADHD and Autism Cookbook: The Ultimate Guide to the Gluten-free Casein-free Diet, says, ‘You can’t shift from grief to hope immediately. You have to go to the worst-case scenario and come back up.’
Many parents feel isolated as they feel the society doesn’t understand what they are going through. Befriending or meeting people who are suffering or are in the same situation could help tremendously and prove to be extremely helpful.
They feel overwhelmed to provide what is best for their child at all times and when they are unable to do so, or fail even in a minor circumstance, their stress level tends to rise again. On top of that, the financial burden that autism brings with it causes further problems and can drive spouses or families apart if not managed well with care and affection.
A study published in the Journal of Family Psychology by Hartley et al affirms the fact that parents of children with autism spectrum disorder had a higher rate of divorce than the control group. As the autistic child requires extra care at all times, regular activities where both parents are needed and one has to stay at home with the child may cause problems as the time spent between the families is splitting and catering to the child’s needs and demands.
Another study by Piven, Chase, Landa & Wzorek (1991) states that ‘parenting a child with ASD requires an inordinate amount of time and energy and may have detrimental effects on marital relations.’
Our own personality traits also have a role to play in shaping how we think or perceive the entire situation. And another very important factor highlighted by Norton & Drew (1994) states that ‘some mothers’ ability to cope with the stress that results from raising a child with a disability may be related to particular characteristics of their children’. Hardiness, which is the capacity of surviving under unfavorable conditions, also impacts stress levels.
A study carried out by Gill and Harris (1991) studied the role of ‘hardiness’ and social support in mothers of children with autism.
Results displayed that mothers who scored higher on the hardiness measure and perceived social support as high had fewer somatic complaints and fewer depressive symptoms than those who had lower scores and perceived less social support.
It is essential for the parents to take extra care of their own self so they are in a better place to take care of their child. If they neglect themselves, they will feel overburdened by the day to day requirements that they have to meet.
Helping your child with autism is a dive into a completely new world where you have to learn even the basics all over again, including the terminology surrounding their illness.
This can be really overwhelming and demanding. Having social support thus proves to be a great help for those who are involved, particularly mothers.
Depression and stress lead these mothers to acquire social support from their families and friends and specifically their spouses. Support provided by spouses counts as informal support and it was observed that mothers benefited from informal support more when under stress in comparison with formal support.
Salisbury (1990) also found out that those with high levels of social support had reduced levels of stress. And this, in turn, helped them to express their concerns and love towards their children more positively.
Environmental And Cultural Requirements Of Autistic Child
Normality has set standards but then again normality is relative and dependent upon culture. It is important for the family to carry on like a normal family so that the significance of the disorder doesn’t weigh heavily on everyone. Family vacations and family rituals are important things that bind and keep a family together.
It is necessary for a family with an autistic child to continue and carry on with these traditions and do their best to make their child comfortable on such trips.
Getting your child a pet has also shown essential benefits.
As the animal is not demanding anything emotionally and is unconditionally affectionate, the autistic child or adult feels safe and comfortable around it and is known to develop a gratifying mutual relationship. Providing the family with information and helping them increase their awareness levels goes a long way.
Meadan et al (2010) states how information from health wellness programs or agencies is helpful.Individuals with autism dislike a change or disruption in their daily routines.
To avoid this disturbance, families or other caregivers can let them know of the changes in advance rather than at the very last minute, so they are more prepared and in a better place to make the required transition.
A study by Schaff et al (2011) found that morning routines were the most demanding as the child displayed the highest number of sensory issues at this time, causing both the parent and child to be late for school or work. This could be avoided by having a fixed bedtime routine which is solid.
Avoiding the use of electronic devices prior to sleeping could also help tremendously as well as training your child to sleep on his own. The environment should also be ‘sleep-friendly’ — away from noises and other sensory issues as an autistic child has heightened senses.
As a society, we need to improve our lack of understanding and be more acceptable and not disregard children with autism. All of us want to be accepted, an autistic child is no different.
They also have expectations just like the rest of us. First step in helping them can be to be clearer in our communication and not confuse these individuals by providing them with cues and instructions.
We should be as patient as we can when around them and not take what they say or do personally and provide assistance and handle them with care at every step. We should also take necessary steps and build services for them which provide them with knowledge and awareness.