First-of-its-kind fee defines ‘profound autism,’ points suggestions | Spectrum
The term “profound autism” should be used to describe autistic people in need of 24/7 lifelong care, announced today a team of autism researchers, clinicians, autistic adults and parents of autistic people.
The guidelines are part of a series of proposals for the field to improve medical care and clinical research into the condition of autistic people. Other recommendations include a shift towards personalized medicine; Adaptation of services for low and middle income countries; and prioritizing funding for research projects that can instantly improve the lives of autistic people.
The team decided to focus on improvements that could be made over the next five years, rather than longer-term goals, says Catherine Lord, distinguished professor of psychiatry and education at the University of California, Los Angeles, who became the group leader convened by the editors of The Lancet. This meant a departure from basic scientific research, such as the identification of biomarkers or the development of gene-specific therapies.
“The question is not, ‘Should we stop?’ – which we definitely shouldn’t stop, ”says Lord. “It’s: ‘What are we doing in the meantime?'”
The Lancet Commission on Autism has also decided to make recommendations that could be adjusted in each country regardless of resource level, commission members say.
The group of 32 representatives from 10 countries met for the first time at the 2019 Annual Meeting of the International Society for Autism Research in Montreal, Canada, followed by meetings at the University of California, Los Angeles in late 2019 and at the journal’s London office in February 2020. shortly before the start of the pandemic. (Two members of the commission, Paul Wang and Alison Holbrook, are employed by the Simons Foundation, Spectrum’s parent organization.)
Her report, due to be presented at a virtual event on Tuesday, is an important reference for autism researchers, says Sven Bölte, professor of child and adolescent psychiatry at Karolinska Institutet in Stockholm, Sweden, who was not part of the commission.
Researchers have information on how to improve the lives of people with autism around the world, but they haven’t done it well, says Tony Charman, chair of clinical child psychology at King’s College London in the UK, who co-chairs the Group.
“The idea is that the Commission is a call to action,” he says.
The report formally introduces the term “profound autism” to refer to autistic people with severe intellectual disabilities, impaired communication skills, or both. The term shouldn’t be used to refer to children under about 8 years of age, and it may be more appropriate for teenagers and adults, the report says.
“The main purpose was to raise awareness that these children and adults exist and that they need different services,” says Lord. “And that we can predict who they will be, not by the age of 2, but by the age of 8 or 9, and we have to plan for them.”
Deep autism can comprise between 18 and 48 percent of autistic people, according to the commission’s analysis of three datasets: the Norwegian mother-father-child cohort, the UK Special Needs and Autism Project, and the US Early Diagnosis Study. In the US group, 15 of the 18 adolescents met the criteria for profound autism at age 12, up from age 23; 9 lived in dormitories and 6 lived at home with “high support”.
The term is a welcome introduction, says Bölte, who has worked to define autism functional categories for the World Health Organization’s International Classification of Functioning, Disability, and Health. It’s also supposed to help researchers clarify who’s participating in their studies, he says.
“Autism is a huge spectrum, and there are people with very, very high clinical demands and performance,” says Bölte. “You need very comprehensive clinical care.”
But the name runs counter to emphasis elsewhere in the report on providing personalized care, says Kelly Israel, a policy analyst with the Autistic Self Advocacy Network who was not on the commission.
“That [term] It seems like it is trying to pigeonhole people, ”says Israel. “They are essentially undermining their own point of view.”
TTo improve care, every country must at least also track the prevalence of autism in its population and provide services that take into account people’s strengths and weaknesses, co-occurring diseases, and the severity of characteristics.
“Only if you know how many people have a particular disease can you set up things in your systems that meet the different needs of these people,” says Charman.
To this end, more research is needed on how much therapy is effective at what age and for whom, the Commission notes.
“Despite the great activity in study intervention research over the past 20 years, these questions have not been answered well enough,” says Charman.
Researchers should “move on” from basic case-control intervention studies, the report said, and instead test the relative effectiveness of different types, durations, and intensities of interventions. Randomized studies must include long-term follow-up; Nations should work together to produce studies that are sufficiently large to account for individual variation among autistic people; and studies and outcome measurements should be designed in collaboration with autistic people and their caregivers.
“You are absolutely right that the evidence base is a mess,” says Israel. “More research needs to be done on which services and supports work best for which autistic people. It has to be urgent. “
More guidance from the report on defining treatment outcomes and achieving the goals autistic desires could have been helpful, say both Boelte and Israel.
The recommendation to allocate additional funding for clinical trials should particularly benefit lower-income countries, says Commissioner Gauri Divan, director of the child development group at the non-profit organization Sangath in Goa, India.
“There are families and children right now who need help,” she says. “We need support with scaling, with implementation, and I think there is now capacity for that.”
The commission advocates a treatment approach called ‘stepped care’ which starts families with the least costly appropriate treatment option and directs children to more intensive services only when needed. The approach must be applied culturally appropriately and can be adjusted based on a country’s available resources, the report says.
The treatment process should also take into account individual preferences, or in the case of young children, those of their caregivers, and the time and resources the family has at home.
“This is very far from biology, but it is a huge factor in what actually happens to autistic children and adults,” says Lord.
The Commission’s recommendation to focus on a person’s needs rather than their diagnosis will help avoid belated or inaccurate diagnoses in countries lacking specialists or culturally appropriate screening tools, says Angelina Kakooza Mwesige, Extraordinary Professor of Pediatrics and Child Health at Makerere University in Kampala, Uganda. And the proposal to train nurses will also help improve access to services, she says.
In resource-poor countries, the list of evidence-based interventions the report highlights is also useful, along with unproven and potentially harmful “therapies,” says Divan.
“These treatments were proclaimed, which I think is very important,” says Divan. “At least one can now say very clearly – if a parent comes to you or a family comes to you – ‘Look, the commission says it is harmful.'”
Lancet commissions are generally not convened again, but Charman hopes the report will draw attention to the fact that individuals can make informed decisions about their care and help create an environment where more of those choices are available to them.
“You don’t get Lancet commissions every year,” says Charman. “This is an opportunity that we want to take advantage of.”
