Parental depression and autism – Part 1

By THE emotional distress, frankly the depression and mental unhinging that can accompany caring for an autistic child, especially depending on the severity of the case, is a prime reason for those playing the role of caregiver to seek individualised counselling and psychotherapy as a part of their overall management of living with autism.

The Maia Chung Autism and Disabilities Foundation’s stance is that with support groups, caregivers should couple this with the one on one help of a psychiatrist.

The foundation, since our inception, has come across enough cases to empirically recommend that outside of the comfort, release and help provided by group therapies such as support groups, particular issues that arise in each autist’s case can see even greater coping capacity when a one on one consultation with a mental health professional is added.

The design of specific cures or protocols for the individual family’s management makes for a better and less stressful living circumstance. This logically speaks to better long-term coping – the type of coping needed for the lifetime of the autistic individual.

Pauline Watson-Campbell, Occupational and Child Behavioural Consultant of the McCam Child Development Centre, says she thinks this is a right approach – a support group in tandem with a personal counsellor can aid parents establish how they really are coping and where they are mentally. This is a feat a little harder to determine in a group where sharing and commiseration are traditionally the objectives, with the importance of the group at the forefront.

She explains, “some things can be addressed in a support group format, especially when those affected hear similar stories, that act as catharsis – but these groups cannot provide the in depth examination necessary to assess when someone is descending into clinical depression or has other related issues that are individualised that may need medical treatment as well as talk therapy, due to their dealing with autism”.

Watson-Campbell lauds the United States model of therapy for various mental and emotional needs which is a cultural norm, this she feels leads to a healthier approach to stress management.

Sadly, she opined, people in Jamaica are still battling, in many cases to their detriment, with the idea of the therapist’s therapy and the seeing of psychiatrist taboo.

She said, “in Jamaica it has not caught on and while the Jamaica Autism Support Association’s (JASA) support group is strong and determined and very effective in having a working forum for sharing and treatment and usable consultations through organisation of specialist visits to their sessions, and have been successful, many other groups trying to mimic this format.that I have worked with have failed, as many persons feel that when they go to the group and share briefly they are okay and don’t have to come back, they feel they have been fixed”.

Added to this, these fledgling groups do not maintain the consistency of a JASA.

Watson-Campbell said she would love to see more strong support groups like the JASA but still feels that coupling these strong support systems with individual therapy is a must.

In the foundation’s increasing dealings with dozens of cases across the country, we have identified too many who need to see a psychiatrist to come to grips with what they face as the parent of an autism affected person.

One client in particular we feel could form a textbook case of a worst case scenario, containing several of the individual conditions of stressors that can accrue from having and caring for an autistic child.

This case involves a woman, who due to the stresses with her boy and his problems related to autism, has deteriorated so severely as a part of her ongoing work with the child, that in most instances she can barely hold a coherent conversation without her voice trembling – her emotions being so raw she always seems at the verge of tears at what many would see as a normal circumstance.

She has become so undone by the wealth of worries – she has undergone the abuse from neighbours who tell her to give away her “retarded child”; she’s unable to pay for his many needs and to increase her woes, her husband, the boy’s father, died of a stroke in 2008.

Even through our foundation’s intervention, it is clear to even untrained persons that she needs to be led back to mental normalcy by a professional, even as her boy has now moved on to receive treatment at The Promise Learning Centre. She is so mentally spent she is unable to work. The good thing is that our client has recognised her mental decline, she has and has taken the foundation’s advice upon her recognition that she needed personal counselling sessions and she has made the decision to register for treatment at the community mental health clinic where she may receive drug therapy as well as individual counselling. We reiterate, all parents facing care for a chronically ill child, combine your group therapies with those of a professional.

There are varied characteristics of depression brought on by caring for an autistic child.

Sadly, there are too many for this piece. Here in Jamaica (and elsewhere) there are many who are ashamed their child has been diagnosed with autism. There will have to be balancing care for your autistic child and in many cases caring too your well children; keeping your marriage insulated and a caring fertile component while riding the autistic merry go round; finding affordable care that is near to your home or place of work if you can work; having no insurance to help offset most costs; the aggressive meltdowns of the autist; societal misunderstanding of what they see, and condemnation. Then there is the worry the fear, the ifs, the constant bombardment of what are the right therapies.

Can you believe that these are just a few of the average problems of the Jamaican autism-affected parent? These things make us sad.

Next week: Why the parents of autists are among the most highly stressed parental units now functioning in the Jamaican society.