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Parents dealing with autism

Date Posted: Wednesday, June 06, 2007
Author: Nastassja Johnston

Parents of children with developmental problems such as autism often spend hundreds of thousands of dollars on treatment but find little improvement in the condition of their children.

“The biggest problem parents have is not that they don’t have intervention; it’s that they do it at the wrong time,” says Julia Harper, an occupational therapist and researcher in paediatrics and sensory integration.

“Parents must be guided into what they should do and it is the responsibility of the therapist to guide parents.”

Ms Harper developed a passion to help children due to the struggle to find therapy for her sister who had developmental problems as a child. In 1996 she founded Therapeeds Inc, a company dedicated to training parents and therapists to deal more effectively with children with developmental problems.

Autism

Autism is an umbrella of many conditions characterised by impaired social interaction, problems with verbal and non-verbal communication, and odd, repetitive, or brutally limited activities. The disorder can affect both boys a girls and is often identifiable in the child by the age of three. More children in Bermuda are being diagnosed with the condition and other self regulating dysfunctions.

Groups such as the Bermuda Autism Support & Education Society provide support but parents often find it a struggle to find the right therapy for their child.

Former society president, Tricia Crow, is a mother of three boys with autism. She says all three were diagnosed by the time they were three-and-a-half. The signs that prompted her to consider the disorder were isolation while playing, lack of eye contact and lack of interaction with other children. All three attend government schools full time and all have received help from therapists, which is expensive. So far she has spent almost $1,00,000 on help for her boys but accepts that this is part of raising autistic children. She says: “It’s life. They are what I have lived for 11 years.”

Currently all of her children are receiving ‘errorless teaching’, which encourages autistic children to learn by building up their self-esteem by always letting them feel like they are right. Prior to finding a suitable treatment she says she would often find herself stressed out but now she sees her children as typical because she has learned how to communicate with them better. She feels that the advice and teachings of occupational therapist is essential for parents of children with autism and other developmental problems.

One-on-one assessments

In an effort to better assess and treat children with developmental problems the Bermuda Autism Support & Education Society hosted a series of one-on-one assessments in association with Therapeeds Inc under the guidance of Ms Harper. During theses assessments parents were taught therapeutic routines beneficial to the development of their children.

One young boy was diagnosed with Self Regulation Dysfunction. According to Ms Harper this means that although he is quite an intelligent boy, he uses the highest functioning part of his brain, the cortex, to carry out the most mundane tasks like maintaining posture and writing, as well as more tedious thought processes required for school subjects. This constant use of the cortex can result in overload and stress which is not healthy and must be addressed to further his development.

Ms Harper also hosted a self regulation seminar at the Bermuda College, aimed at helping parents to learn how to deal with their children’s conditions in a more practical way. More than 60 parents attended and learned about a range of subjects including the relationship between the processing of information by the central nervous system and behavioural abnormalities.

Parents dealing with children with developmental problems learned that the root of their issues lie with the functioning of the child’s nervous system and their sensory processing. A child with good sensory processing, according to Ms Harper, exhibits self regulation, which is the ability to sustain an organised Central Nervous System (CNS) and match the demands of the environment or task allowing them to pay attention, focus, and engage in activity and purposeful interaction.

“Self regulation dysfunction occurs when there is a breakdown at the upper brainstem and cerebella structures,” explains Ms Harper.

“When there is a breakdown of the upper brain stem the result is distractibility. The cerebellum controls posture and balance, motor functions, refinement of movement and it plays a role in the processing of language, music and other sensory temporal stimuli.”

According to Ms Harper there are two categories of self regulation dysfunctions: environmentally driven self regulation and skill driven self regulation. Environmentally driven self regulation occurs due to stress caused by the environment and is caused by the child being removed from their comfort zone. Children’s skills degenerate and the child typically fidgets and cannot pay attention.

On the other hand, skill driven self regulation problems result from the stress caused by task demands, lack of automation of skill and overuse of the cortical strategies resulting in poor multitasking. Diagnosis of this condition requires teacher and parent observation as well as clinical observations through testing. This assesses the cerebellar functions, conscious movements and primitive reflexes which are present in vitro. According to studies carried out by Therapeeds Inc, self regulation has three distinct levels: primary which affects bottom self regulation, secondary which affects the brain stem and cerebellum and tertiary which affects cerebellum and midbrain work.

Primary cases can be regulated through breathing exercises, diet modification, aides for digestion and sleep improvement. Secondary regulators treat the child’s ability to find or avoid sensory input, balance, posture and retained reflexes. Many autism spectrum disorder patients lack the ability to self regulate, However, many children who posses similar dysfunctions are misdiagnosed as having the disorder resulting in treatments that often evade under lying causes of emotional and physical disabilities that are seen in children worldwide.

For more information about the Bermuda Autism Support and Education Society contact Tricia on 5357277 or Thea on 2368306 or email tcrow@northrock.bm

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