Reality fragmented

[Posted on 3 August, 2017 by Christopher Gillberg]

Many of us are frustrated by the long waiting-lists and waiting-times that exist in services for children with neurodevelopmental disorders/ESSENCE. Also, there is an unbelievable fragmentation of those services, and families keep being referred and pushed around from one ”unit” to another. New guidelines from the County Council or the Local Community are issued time and time again without any sense of coherence. Practitioners spend an enormous amount of time deciding who belongs where; ”this is not autism so it is not for us”, ”this is speech and language disorder with ADHD, cannot be a case for child psychiatry, could it be habilitation or pediatrics?”, “this child does not meet criteria for any disorder but is extremely functionally impaired, what do we do now?”

Much of this unacceptable state of affairs is caused by the existence of the County Councils. They are run by people who have no clear understanding of the scope or nature of the problems involved. They usually know very little or indeed nothing about ESSENCE. They do not seem to have the first idea about the need for a comprehensive perspective when it comes to services for children and families affected by ESSENCE. They believe assessment and ”therapy” should be kept apart and even belong to different organisations.

The first step in getting it right and in building up seamless ESSENCE-teams is the dismantling of the County Councils. Enormous amounts of money would be released and services would be developed as needed, not as command economy directors would have it based on some unformulated theory. How can it not be obvious to everyone that we would be (much) better off without the County Councils?

I have just written an editorial for Göteborgs-Posten about this:——

“In an ever more fragmented health care system, it has become increasingly difficult for people living in Sweden to quickly find the right diagnosis and treatment.

This is especially true of the approximately 10 per cent of the population who, from early childhood onwards – usually throughout their whole lives – have major neuropsychiatric problems. These include conditions like developmental and adaptive difficulties resulting from ADHD, autism, tics and Tourette’s syndrome, language disorders, intellectual and cognitive disorders of other kinds, epilepsy, and also “minor groups” with specific genetic or environmentally based injuries to their nervous systems. The early symptoms – which generally start manifesting during early childhood (preschool/early school age) – might not only be confusingly similar for the various diagnoses but also mutually overlap with one another. If they go undetected or misdiagnosed – and thus “mistreated” – in the early years, the resulting problems are typically very severe, everything from failing at school and the workplace, to long-term sick leave, massive psychiatric over-morbidity, drug abuse, auto accidents, social maladjustment, criminality and even premature death. However, with the right support, early identification of strengths (not just weaknesses) and encouragement instead of exclusion, the prognosis can end up being good in many cases.

The term ESSENCE, an acronym denoting Early Symptomatic Syndromes Eliciting Neurodevelopmental Clinical Examinations, includes all the aforementioned and frequently overlapping disorders.

In order to optimally determine the necessary early (and reasonable follow-up) supportive measures, including scientifically based, empirically proven treatment – both in care and habilitation services, as well as in preschool/school – we need cohesive and collaborative knowledge centres along with closely associated investigative, treatment-related and educational efforts. Tight collaboration between various institutions aimed at children, adolescents and adults (including older ones) with ESSENCE is also a crucial condition for achieving positive results when implementing individually tailored targeted measures – which in rare cases might mean curing the condition, but much more often improved/good quality of life, reduced suffering, and lower costs for individuals, families and society at large.

The things I have just addressed may seem like a given – and in my opinion they absolutely are. However, at present, virtually nothing works the way that it should. Some children are referred at an early stage to neuropsychiatric units to be examined for autism. Others – possibly with the same fundamental problems – are referred to speech and language therapists to be examined on account of delayed language development. Still others – again, with the same fundamental problems – are referred to CAP to be examined for conduct disorder or depression or eating disorder. Depending on which specialist you meet with, different measures are implemented, generally only after referral elsewhere – and after waiting everything from many months to several years, efforts that are rarely if ever coordinated to take care of the totality of the problems facing the children and their families. A person diagnosed with autism at the “autism unit” before the age of five may get some priority (meaning within three to eighteen months) in receiving autism-oriented intervention measures from habilitation services, but not in terms of more comprehensive help measures, which e.g. concurrent ADHD problems or language disorder might call for. A person diagnosed with language disorder at the language unit (speech and language therapy clinic) might receive help with their language problems, but not for their potential concurrent motor abnormalities or autism. A person ending up at CAP might be diagnosed with depression and to some extent get adequate help in dealing with it, but no help at all with regard to their underlying ADHD problems. A slightly older person with autism may not be directed to the autism unit but instead to CAP (after waiting for one to two years), where they identify the “secondary” eating disorder or anxiety or depression, subsequently treating these problems, only to two years later refer the person in question to the autism unit on the basis that “perhaps he/she also has autism?”

The autism unit and unit for speech and language therapy, as well as CAP (which are all separate and mutually require referrals for any traffic between the three), all belong to the health care system, while habilitation services answer to a different authority, and schools and preschools to yet another one. There are no longer any natural channels between the different components. Habilitation services have their own entirely separate guidelines that need not be coordinated with needs of other institutions, nor even always the needs of the families. The target demographic for examinations and intervention efforts varies enormously from one place to another and is controlled top-down by administrators of the municipalities and county councils, who are completely disconnected from the everyday clinical and educational contexts. Child care centres no longer have any self-evident connection with preschools and school health care services can be arranged without any real participation from a medical doctor, leaving headmasters with full responsibility for organising/arranging the whole thing.

Almost all of us working “on the ground” – whether the ground refers to the autism unit, speech and language therapy, CAP, habilitation services, schools, preschools – find it obvious that this is not good. And it has been obvious for many years. Even so, things are becoming increasingly fragmented – and subject to top-down control. We need cohesive ESSENCE examination and intervention teams, not ones that are divided and disjointed. We need help measures based on real needs, not the theoretical assumptions, hot air and “projects” of county council administrators who seem completely out of touch with reality.

Dismantle the county councils with their unbelievable amounts of relatively highly paid administrative functions – and their completely unmotivated planned economy-style directives Merge habilitation services with health care services, improve and expand resources for child and school health care, make it obligatory for health care and preschools/schools to collaborate. It is easy to imagine all the many children and families who might be able to get help quickly with the aid of problem identification, diagnosis and measures/treatment and their improved prognosis. The top-down control emanating from the county councils and the administrator-led fragmentation “on the ground” can be blamed for much of what is described as failures in PISA, elimination from school and the job market, and the burden that families with undetected ESSENCE struggles with each day”.

Please think long and hard about the County Council problem. If you can come up with one argument why we should keep them, please let me know!

[This is a blog. The purpose of the blog is to provide information and raise awareness concerning important issues. All views and opinions expressed are those of the writer and not necessarily shared by the GNC.]