Autism beyond diagnosis

In this concluding article on autism, Dr N P Karthikeyen & Subathra Jeyaram advise parents on ways to come to grips with the diagnosis and to initiate the process of managing an autistic child

In the previous two issues, on the series of articles on “Positive trends in Autism” from DOAST Integrated therapy centre for Autism, Chennai we dealt with the history of the disorder and the ways to overcome the diagnostic dilemmas. This concluding issue is devoted to parents to help them come to grips with the diagnosis, and to initiate the process of managing the child. This issue also addresses the responsibility that lie ahead for caregivers and other professionals in the management of autism. We also attempt to address the issue of implicit attitude towards people with autism, and how it influences intervention.

No one knows for certain exactly what causes autism, nor do we understand why there has been a significant and increasing incidence of autism. Current estimates suggest the ratio of 1 in 200. The only thing we can be certain about is that we are going to have an increasing number of children diagnosed with autism spectrum disorder (ASD), requiring parents and professionals alike to be prepared on a conceptual, emotional and practical level to meet their needs.

The increasing incidence takes its toll on the socio-economic well being of the affected families, and the society at large. To put it in perspective, statistics reveal that the cost for the US Government to take care of their 1.5 million individuals with autism is a staggering USD 90 billion each year. However, experts at the Autism Society of America feel that the cost could be reduced by more than one-third through early diagnosis and intervention. Increasing public awareness is the key to achieving the target of improving early diagnosis. It is important for us to learn from the US experience and chalk out an effective management strategy for the increasing number of patients in our country.

Dos and don’ts for parents with children diagnosed with ASD

Dos

• Accept the diagnosis and issues surrounding it at the earliest.
• Search for professional service providers in your vicinity, seek the help of an NGO wherever possible.
• Search the web if possible for gathering knowledge about the disorder and for clarifying myths and misunderstandings.
• Share responsibility and devote time for management of your child between you and your spouse.
• Maintain a healthy relationship between you and your spouse. Your physical and psychological well being is very important for the health of your child.
• Explore newer treatment techniques after careful assessment and evaluation.
• Provide a reasonable time for the child to adapt to a new training method before calling it a success or failure.
• Join parent groups, if available. They are the ultimate source of help and support.
• Believe in your strength and the ability to train your child positively.
• Maintain a diary about your child’s day-to-day activities, progress or deterioration. If possible, video graph child’s activities.
• Delay the next child.
• Plan economy judiciously, the training or treatment is long drawn.

Don’t

• Indulge in self-blame or blaming your spouse for the situation.
• Bother too much about what others might think.
• Blame others if you do not get assistance, learn to help yourself as it is good in the long run.
• Get carried away by biased opinions on the web and new research drugs and therapies. Take expert opinion when in doubt.
• Jump into newer treatment avenues, drugs or magic remedies just because they are very well campaigned for.
• Run away from a new problem, face it courageously and overcome.
• Consider your child as a liability. If you identify and cultivate his special interest, he can be an asset.
• Believe in miracle cures and cures coming with a price tag

Early intervention and education

Clearly, an important factor in developing a child’s long-term potential for independence and success is early intervention. The sooner a child begins to receive help, better is the opportunity for learning.

Furthermore, because a young child’s brain is still in formative stages, scientists believe that early intervention gives children the best chance of developing their full potential. Researchers have begun to identify factors that make certain treatment programs more effective in reducing or reversing the limitations imposed by autism. Recognising that parents are the child’s earliest teachers, more programmes are formulated to train parents to continue the therapy at home.

Any education targeting individuals with ASD need to; firstly, help the child compensate for any difficulties they experience (a compensatory approach), including missed opportunities to learn; and secondly, help the child develop in ways that address the fundamental features of the ASD (a remedial approach).

Critical features of early intervention for children with autism spectrum disorders (ASD) include the following:

• Curriculum which focuses on a child’s ability to attend to relevant aspects of his/her environment.
• Develop verbal and motor imitation skills.
• Develop language comprehension and functional communication.
• Learn appropriate toy play skills.
• Develop social interaction with non- disabled peers.
• Currently, there are no comparative studies as proof that any single approach is better than any other. Professionals generally agree on the essential features of intervention for children with ASD than they do on the “best” intervention programme.

Some of the general principles agreed on are:

• Parental involvement and training is a recommended educational component of good interventional programs.
• The involvement of the child’s peers in the education and training.
• A multidisciplinary approach is also generally endorsed, over any one intervention program.

In 1996, the New York State Department of Health (DOH) developed clinical practice guidelines to support the efforts of the Early Intervention Programme. This guideline is to help assure that infants and young children with disabilities receive early intervention services consistent with their individual needs, resources, priorities, and the concerns of heir families. The guideline is intended to help families, service providers, and public officials by offering recommendations based on scientific evidence and expert clinical opinion on effective practices for the following:

• Early identification of children at risk or suspected of having a disability through routine developmental surveillance and screening targeted to identify specific disabilities.
• Provision of multidisciplinary evaluations and assessments that result in reliable information about a child’s developmental strengths and needs and, when possible, a diagnosis.
• The determination of effective intervention strategies and reaching agreement on the frequency, intensity and duration of early intervention services that will lead to positive outcomes for children and families.

How are we placed in our country?

The Indian government with its limited financial resources has prioritised its healthcare delivery. Ministry of Social Justice and Empowerment has set up a National Trust for the welfare of persons with autism, mental retardation and cerebral palsy, vide National Trust Act 1999. Considering that the incidence is three to four autistic children per 1000 births (US Statistics), government alone cannot handle the problem. Though there are significant number of NGO`s involving themselves in the service of autism, they lack effective networking and hence there is no sharing of knowledge which would ultimately result in better quality of service. Though, they are doing yeomen service, their output can be improved by effective interaction and better database of services and number of patients. At present, given the limited number of options in therapeutic services a parent has to satisfy himself with what he is able to get. Many a times this may lead to frustration and assigning oneself to fate, especially the rural areas of the country. Lot of dedicated work is required to improve the scenario.

The extablishment of a Childhood Disability Group by the Indian Academy of Paediatrics in the year 2003 is a step in the right direction for spreading positive awareness among the core group – paediatricians – who have the potential to diagnose children early. The second national conference of this group in Hyderabad recently emphasised the role of paediatricians in the identification and early management of this growing population.

Often parents have access to an array of information, thanks to the internet and various forms of media; print and visual. While it is good and essential for parents to be empowered, there is no monitoring of such information, making parents vulnerable to claims that are not only misleading but mostly fraudulent.

Even as we write this article, it pains us that a number of the parents whose children have been diagnosed with ASD are after magic cures, often paying ridiculously high charges for treatment aimed at cure. There is no known cure for autism and if there were such cure available it cannot be available for only a privileged few.

The need of the hour is a positive and healthy assistance from the print and visual media to spread knowledge about autism, and the facilitator services available. With increased awareness, the quality of professional service will improve automatically, as enlightened parents are unlikely to be exploited.

A call for shift in attitude towards people with autism

People with ASD are individuals in their own right, whose deficits should not blind us to their strengths and appealing qualities. Further, only expecting them to adapt to our culture is unfair. We too must take efforts to accommodate and appreciate their unique and different ways of being.

A child with autism is not merely a compilation of symptoms. Although ASD can only be identified from a person’s behaviour (there are no biological or objective markers known), our understanding of the person has to go beyond these symptoms. An insight into the underlying cause(s) of the person’s behaviour is pertinent to appreciating the disorder in the person and not merely adding one more statistic to the disorder. Although behaviour is the only visible cure for autism, ASD does not merely lie in the behaviour but in the complex mechanism that underlies each behaviour or patterns of behaviour in each individual.

Behaviours are an individual’s response to the events and situations in his/her environment. Individuals with ASD are no different; their behaviors are also individual responses to what they perceive of their environment. Individuals with autism are also making sense of their environment and developing idiosyncratic ways of reacting, which often seem very bizarre and superstitious to us. People with autism find it difficult to understand why people behave the way they do and rely a lot on blind associations of behaviors and events based on past experiences. This in a way explains why individuals with autism are inflexible about their choices and behaviors. To illustrate, it is not surprising to think that one needs to wear shoes to get an ice cream, because the last time you were wearing shoes when you ate ice cream. Therefore you insist on wearing shoes because you want an ice cream, although you might be in bed.

We are aware that to the average person, behaviour is a matter of choice, control and will. Although we may not want to, we can turn off the football game to finish that report for work. We can use our inhibitory abilities to control anger and keep quiet for the sake of workplace harmony. We assume that everyone shares these abilities.

Going a step further, learning is dependent on the integrative function of the nervous system. Combined or individual sensory inputs from the visual, auditory, tactile, olfactory, visceral sensors enter the nervous system. If the particular sensory input excites the mind, it is immediately channeled into proper integrative or motor areas of the brain for immediate appropriate response or storage and memory for future utilisation. This “proper integration of sensory inputs” is the fundamental functional unit of learning and behavior. The individuals with autism lack this remarkable ability of “sensory integration”.

Often parents and professionals emphasise managing behaviors (termed challenging) as a priority. Effective management strategies are possible only when one has an in-depth understanding of the child’s behavior. It is important to teach the child alternate and acceptable behavioral responses. Children with ASD simply cannot inhibit behaviors, and trying to stop behavior are often unsuccessful.

What is more helpful is establishing a reason for the behavior and then develop alternatives or establish a different routine for the behavior (e.g. work, then play), if it is simply that the child is doing the wrong thing at the wrong time. Changing behaviour is never easy, so it is preferable to set up structures that help the child to avoid challenging behavior and learn what is required.

Parents require an extended network of support from other parents, family and friends. Parents need to be empowered to manage their child in an educational way and balance this with the needs of the family as a whole. ‘Good’ parenting alone is not sufficient to deal with the needs of a child who is neither able to learn social and emotional signals nor give the right signals to trigger the nurturing care of others. Parents can feel deskilled, and need support in persisting with attempts to engage with their child. Professional caregivers also experience similar feelings in the early years, and need to understand and deal with their own reactions, before they can be in a position to support parents. Often working together in equal partnership (the parent and professional) can be the most rewarding, honest and fruitful way forward in trying to understand the child and build an effective programme.

What is the status of self-help groups?

Parent movements and self-help groups are growing. They are better placed in some states like Karnataka which others need to emulate. These groups are essential for mental peace of the parent, that their child would be taken care even after their time.

Is there a hope of better times in the future?

Yes, certainly. During the 1940`s to 1964, the condition was believed to be a psychiatric illness blaming parents. As discussed elaborately in the previous article on history, after Dr Rimland`s involvement, research on the neurobiology; genetic influence on the brain development and neurotransmitters were analysed. Researchers were able to reasonably identify the anatomical and functional areas of defect after the advent of functional MRI and PET-CT imaging techniques. PET-CT has really revolutionised the understanding of neuro-transmitters and the areas of the brain involved in ASD.

Beginning 1990`s endoscopic assessment of gastrointestinal ailments suffered in silence by these individuals with autism opened up the third dimension in understanding of their behavioural problems. These painful visceral triggers were affecting their sleep and daytime behaviour to a considerable extent and hence control of the gastrointestinal pathology added significant improvement in their management. Understanding the role of elevated sympathetic tone in their hyperactive behaviour was the outcome of this systemic finding.

In recent times, techniques of biotechnology has come to the rescue of researchers. Live brain-frozen section immunocytochemistry techniques reveal neuroglial inflammation, especially in cerebellum and brainstem in individuals with autism. The role of cytokines and dysregulated immunity in the disease process is being studied in detail.

Outcomes of research studies are able to reasonably assess the physiopathology behind autism. The ongoing research is concentrating on effective therapeutic techniques and drugs to correct the same. Research findings – focus on treatment – treatment to help and improve the quality of training - all these things promise better tomorrow.

Insight into the present and future treatment possibilities

As on date, the immunopathological discoveries do not provide answers to the complex etiopathology of autism. The complexity of the human central nervous system indicates that there will be no single unifying factor in nervous and immune system interactions. In fact, the plethora of factors determining the final result of integration between different components makes it increasingly difficult to formulate a general theoretical concept and a coherent view on brain function within the framework of other organ systems.

At best, we have now begun to understand how disruptions of feedback regulation between neuroendocrine and immune systems contribute to the development of neuropsychiatric and immunologic disorders. They provide important leads, to further explorative research for novel therapeutic techniques in future.

The effort at our DOAST treatment centre is to follow the leads and focus on safe, rapid and effective interventions focusing on the “now”- rather than to keep the entire present generation of individuals waiting, for the sake of clear cut “answers” from ongoing research studies.

Cytokines and products of immune system are understood to have widespread effects on neuronal pathways, and may potentially play a role in many features of Autism, such as mood and sleep disturbances. In the emergent phenotype of regressive autism, autistic enterocolitis and the identified neuroglial inflammation in the CNS, GI tract has been identified to play a significant role in the proinflammatory activity involving cytokines. Therapeutic modification of cytokine activity may provide some insight into their role in the neurodevelopment features of autism with the identified potential for cognitive benefit.

Medicinal techniques and drugs used in traditional Indian medicine are now attracting the attention of scientists all over the world as potential immune modulators. At least now, the concept of “body and mind” medicine advocated by the traditional systems is possibly getting the due attention of scientific community. The role of food as medicine advocated by the science of naturopathy and yoga possibly work on positive modulation of immune response with their therapeutic activity targeted on elimination of intestinal toxins.

What is the treatment strategy at DOAST for autism?

With our present therapeutic focus on correction of pathological dysfunctions of the gut in children with autistic enterocolitis, we observe effective treatment benefits. The painful bowel symptoms suffered by these patients are immediately addressed with benefits in behaviour and attention. We also feel that this may modify cytokine release through elimination of viral load. But this observation needs further controlled study. The immediate benefit obtained is behavioural improvement, whilst the most desirable outcome aimed at is cognitive benefit.

Dr Karthikeyen is an ENT Surgeon and Jeyaram is a clinical psychologist, both representing DOAST Integrated Therapy Center for Autism, Chennai