Autism in Russia: from early diagnosis to assisted living
Experts have been telling TASS about a conference that discussed how an autistic person can avoid being admitted to a psycho-neurological residential institution and what prospects there are for people with mental disabilities.
Society is not ready
Anastasia Zalogina, President of the Naked Heart Foundation, said that the need to promote social inclusion in Russia was vital.
“The professional community and society as a whole still doesn’t fully understand the true nature of autism spectrum disorder. This ultimately affects our society’s ability to become inclusive and open to people with different developmental characteristics”, said the expert.
Last year, the Naked Heart Foundation carried out research in a number of major Russian cities which revealed that very few people know what inclusion actually means. For example, when people were asked a specific question such as “Are you prepared to spend time with the disabled (e.g. those living next door or children being able to study with one another)”, most of those asked answered “No”, said Anastasia.
“Our task now is to raise public awareness of autism. So with this in mind, we have arranged for stories about autistic people and videos that debunk myths about autism to be broadcast in the Moscow metro throughout April. Despite the fact that we are all different yet in many respects rather similar, we can live together”, said Anastasia.
“We must stop making a distinction between disabled and able-bodied children – this is key to inclusion”, said Elena Klochko, Chair of the Board of the All-Russian Parents of Disabled Children organisation.
Experts say that early diagnosis is one of the key factors that contribute to the successful adaptation of an autistic person within society. However, according to Anna Bitova, Director of the regional NGO the Centre for Curative Pedagogics, early diagnosis is not universally available and varies from region to region. However, after having received the diagnosis, a family does not know what to do next.
“Even in Moscow where there are lots of NGOs engaged in the rehabilitation and development of autistic children, parents are still unsure where to turn for help. There is no clear roadmap”, said Bitova. In her view, such a pathway is needed to ultimately enable a family to live with their child at home. This is the notion of early help and avoids children being admitted to residential institutions.
“Most of the money in Russia goes to residential facilities and rather less to support in the home. From the age of 18 they stop the payments, even the miserable sum of 5,000 roubles which a mother used to receive for child care. How on earth are you and your child supposed to survive?” said Bitova.
Lyubov Arkus, founder of the Centre for Inclusive Education and Social Adaptation for People with Autism, “Anton is right here”, outlined the various stages in a person’s personal development plan. “Making an early diagnosis and intervention is a good first step. Then we come to the most important part: education, then adulthood, assisted living and employment for those who are able, or some form of assisted living in society”, she said.
The experts’ community recently learned that the Ministry of Labour was about to invest 50 billion roubles in the construction of new psycho-neurological residential institutions (PNRIs). According to Arkus, everything is being done to ensure there are more and more of these places in Russia.
“Children are simply dismissed as having no future prospects and mothers told to “put your child in a State institution because you won’t be able to cope on your own”, Arkus added.
“For all the progress we (NGOs – Ed) have made in developing a detailed social pathway for autistic people, such achievements don’t amount to much when set against the problems inherent in PNRIs, together with the shortage of apartments and assisted living provisions and a lack of support in work. All the effort invested in a child and a person comes to nought if parents are no long able to cope with them”, said Maria Bozhovich, Public Relations Director at the Vykhod charitable foundation.
Change in diagnosis
On reaching adulthood in Russia, it is common practice for the “childhood autism” diagnosis to be changed to either mental retardation or schizophrenia. There can be no justification for this.
“This only happens in Russia – in other countries, the childhood autism diagnosis remains the same for life. Parents have asked the Ministry of Health why this diagnosis is being changed for children who are still in their teens. However, the Ministry found no basis for this. That’s why doctors are instructed to change the diagnosis only if it’s absolutely necessary”, said Anna Portnova, chief independent psychiatrist at Moscow’s Department of Health.
According to experts, diagnosis is often changed from autism to mental retardation and mainly applies to wards living in residential institutions. A person who has quite different life prospects is, in effect, deemed to have limited or no legal capacity.
In order to convince the State to invest in inclusion rather than correctional education, Arkus has suggested that NGOs and parent groups join forces and say that all this is inhuman, uneconomic and inefficient, not to mention the fact that psycho-neurological residential institutions (PNRIs) represent a total violation of human rights.
“If a family can support an autistic child, assisted living will cost the State less than putting them in a residential facility. In PNIRs, a lot of money is paid to ensure a person dies and in the case of assisted accommodation to ensure they remain alive”, said Arkus.