Autism: short English overview of the situation in Estonia (2016)

There is no statistics on the amount of people with an ASD diagnosis in Estonia because of the law about protection of personal data. It seems to us that, due to cultural, environmental and other reasons, the actual number of autistics and people with autistic traits in Estonia is higher than in most neighboring countries.

For now, we are very far in Estonia from being accepted as a neurominority that have equal human rights compared to other citizens. There are huge problems in the Estonian educational system and other areas of the society concerning discrimination of autistics and aspies. There are no support services that would be designed for autistic people. Rehabilitation services are generally too difficult to apply for autistics and their families – a lot of papers to fill, very little or maybe no good service providers, absolutely no quality control or feedback evaluation of the service, limited hours on some services, financial limits, etc. One of the prevalent services is „supported housing“ that stands for sharing a rental flat with other psychiatric patients. One still has to pay rent, but the service providers will provide advice in managing the flat and the everyday life. This service, as well as other services like the day care centers are designed for physically or intellectually handicapped people. People with Asperger’s or other neurological conditions will not benefit much from these services, as the service providers have no knowledge of autism and no motivation to educate themselves in order to provide a better service.

This year, the new employment reforms (called „work ability“ reforms) came into effect in Estonia, that in our opinion, aggravate greatly the situation of autistics and other neurominorities. That is partly because of the new „activity requirements“ that everyone must follow in order to get the minimal social allowance in case of incapacity to work. This activity mostly means compulsory social activity – taking initiative in contacting regularly the workers of the Estonian Unemployment Insurance Fund and actively looking for jobs and contacting possible work places. That means that good social skills and being OK with frequent socializing is a must for every disabled person since this year. If you don’t show this social activity and don’t act more neurotypically, then you will be deprived of any social benefits.

It states on the home page of the Estonian Unemployment Insurance Fund: „The goal [of the reforms] is to change people’s attitudes towards those with decreased working ability and help them find and secure employment. … As of 1 July 2016, the Unemployment Insurance Fund will launch the working ability assessment of people with decreased working ability and the payment of working ability allowance.“ – This working ability assessment was previously done for psychiatric patients by  psychiatrists, and there have been many complaints about incompetency even there. The psychiatrists have limited knowledge about assessing the needs of autistic people. These assessments are known to often consider only physical and visually distinctive impairments that the assessor can observe during the assessments. But now, this working ability assessment that is the basis of determining the social benefits, will be performed by the Unemployment Insurance Fund’s mostly neurotypical office workers that probably have even less understanding about the needs of neurominorities. It may  be true that the assessments are or can be based on some doctor’s opinion or the patient’s digital medical data in the official Patient Portal of Estonia, but there have been many cases when the data have been missing partially or entirely and a deeply disabled person has been assessed as 100% fit for work.

The outcome of this assessment depends directly on the self-description of the person that is being assessed by the Fund. This means that the level of communication skills of a person determines if the person will or will not receive the disability allowance. It is usual for an aspie to habitually pretend to have much better coping skills than he/she really has. This habit is formed as a result of the continuous pressure of the society to conform. An autistic person may also not very well understand the scale of difference between the level of job-related problems of a neurotypical person and himself, thus describing his problems as much smaller than they are in reality. He may also not be verbally skilled enough to provide credible evidence of his special needs or disabilities. The assessment of disabled people is based on the idea of forcing disabled people to accept jobs that they would not have previously accepted due to their disability. Also, one can only get social benefits through the pathology model of disability and through admitting being mentally ill.  That may be humiliating for some autistic persons that do not see their neurological differences as pathological. The assessment will probably  take into account only an autistic person’s level of „working ability“ and not his/her problems in using e.g. the public transport or not tolerating the food options available on the job, etc.

The social benefits will be decreased with the new system that is built so that most of the sufferers are neurominorities and psychiatric patients. There are many other problems related to the new reform that we don’t have time to discuss here. E.g., there are not enough jobs in Estonia suitable for autistic people, so majority of autistics are compelled to work in jobs that are damaging for them. Practically, we can see the new reform as an economic form of violence that is similar to the eugenics movement. There is no doubt that many autistic people will end up in psychiatric institutions or with suicide for reasons directly related with the reforms.

There are many other problems that autistic people face probably more in Estonia than in many other countries. There are serious problems involving violating the basic human rights of autistic people and people with mental health problems and lack of competence in the Estonian healthcare and psychiatric institutions, as brought out by the recent report of the Estonian Patient Advocacy Association. There is no English version of the report. (Some of the issues covered in the 2015 report are also brought out in a 2010 report that is also available in English.) These issues include:

  • Involuntary hospitalisation of persons with mental health problems (autism is generally considered a mental health problem in the Estonian healthcare). There is no tool for assessing one’s capacity to give informed consent for admission and treatment.
  • Neglectful and patronizing attitude towards clients. That includes not taking into account client’s real needs and wishes when providing services. Many cases are known of verbal and physical violence toward clients from the staff of the institutions.
  • Non-speaking autistic persons are deprived of a possibility to communicate with institution workers or other people via an alternative communication channel or device. Mental healthcare specialists have not had any training concerning how to appropriately deal with non-speaking clients.
  • Some autistic persons show „problematic“ behaviour that is clearly related to the incompetency of health care specialists treating them. These clients are often restrained using violence and submitted to compulsory treatments with cheap drugs and other harmful methods in psychiatric institutions.
  • Autistic people and mental health clients are forced to live in institutions together with persons with intellectual impairment. For autistic people, this seems humiliating and wrong, as their intellect generally is intact and they need different kinds of assistance.
  • There have been some plans of deinstitutionalisation in Estonia that is recommended by the experts of the European Commission, but the execution of these plans has failed completely and there is no hope for this to have noteworthy success in the near future.
  • Mental health patients living in mental health institutions are deprived of rehabilitation possibilities and possibilities to engage in meaningful actitivities and their health and various skills get worse rapidly, living in the institutions.
  • There is no possibility for work or self-actualisation or feeling oneself as a part of the general society in the institutions. No access to phones, internet or newspapers. Very poor access to medical services. No access to juridical help. No dental treatment, problematic teeth will only get pulled out.
  • On average, clients in institutions get 17-60 euros per month to cover all other life costs except food and housing. This means very low quality of life only because of their disability.
  • The rules of informed consent of treatments and providing information about the treatments are being disregarded.
  • In many cases, the death circumstances of clients in institutions are not investigated, even if the families of the clients claim it to be investigated.

We have asked the Chancellor of Justice of Estonia about what has been done about these issues since the report of the Estonian Patient Advocacy Association. They answered that they have made recommendations to the relevant institutions based on the report, but unfortunately they can’t actually change the situation.

As one possible solution to many problems described here, we support the concept of unconditional basic income. In Finland, there will be a basic income experiment starting soon, and we hope that Estonia will follow with it’s own experiment.

To illustrate the points made in this overview, we end it with a quote from Will Hall („Harm Reduction Guide to Coming Off Psychiatric Drugs and Withdrawal“, page 12):

„Society must include the needs of sensitive, creative, emotionally wounded, and unusual people who make contributions to the community beyond the standards of competition, materialism, and individualism. To truly help people who are labelled mentally ill, we need to rethink what is “normal,” in the same way we are rethinking what it means to be unable to hear, without sight, or with limited physical mobility. Universal design and accommodating those of us who are different ultimately benefit everyone. We need to challenge able-ism in all forms, and question the wisdom of adapting to an oppressive and unhealthy society, a society that is in many ways itself quite crazy.  A social model of disability means accepting human differences, and no longer treating the impacts of poverty and oppression as medical problems. Our needs are intertwined with the broader needs for social justice and ecological sustainability.“