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Autism in Denmark: still much to do

As part of our series of articles focusing on 'autism around the world', Heidi Thamestrup, President of Autism Denmark discusses the current landscape of support, provision and understanding for autistic people and their families in Denmark. Heidi examines the changes the country has seen in its approach to education, employment and criminal justice, and the changing approach taken by the government in the provision of support

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Author: Heidi Thamestrup

Autism in Denmark: still much to do

Even though we as a society have come a long way in terms of knowledge and activity in autism, there is still much to do. In Denmark autistic people experience great challenges in schools and in the workplaces, and we know very little about older autistic people. But we are taking important steps with knowledgeable professionals, new reforms in politics and more studies in autism.  

Local governments become responsible for the citizens

Until the reform of local governments in 2007, neurological disabilities were the counties’ responsibility in Denmark. Back then there was high prestige in working with those with complex needs and in specializing in particular areas of work. When achieving good results autism professionals or institutions were honored, and that resulted in practical research everywhere in Denmark. Sharing knowledge became a way to profile oneself and the workplace.

The reform of local governments was well underway in 2012, and the 98 new local governments were now responsible for the care of their own citizens, even if they had disabilities that required a high degree of specialization. Our skilled autism experts saw that local governments lacked the knowledge to understand the task and could therefore not carry it out. 

This resulted in a huge market for independent autism consultancy, if you could afford it.

Visions are not enough for inclusion

In 2012 there was a great political focus on special schools. The local governments noted that they spent 30% of the school budget on only 12% of children, namely the children who went to a special school. This resulted in a two sided debate, one side focused on the children who were excluded from society - and the other side on the perceived unfairness of such small a group costing so much money. Inclusion became a word that defined where you were located, not a word that told about the ability of an organisation to recognize people with a different mindset, or to accommodate them as an important part of the school.

The public schools in Denmark have always been the same way – conformist. The only changes have been cuts in funding and streamlining – two things that have been detrimental to children with special needs. There is a lack of knowledge, and local governments have not yet understood the need to hire staff with expertise.

Along came the introduction of the Inclusion Act which saw students moved from special schools to general school. The result is a large proportion of students who no longer go to school. About 1/3 of enrolled students with autism do not attend school. They have experienced a series of defeats and now sit at home with anxiety, poor self-esteem and a feeling that they are not worth anything. And that reflects onto the parents, who end up feeling very frustrated.  

Specially organized education (SOE) 

In 2006 the Danish government decided to create an educational opportunity for young people who could not get an education in the regular education system. This new educational model provides 3 years of education and should ensure that disabled youngsters are able to live up to their potential. The government understood that not all in the target group would have the same needs, and that it was necessary to adapt the education to the young peoples’ individual needs.

Some young people need to learn the most basic skills; other autistic youngsters have unique skills, which with a little targeted guidance can become their livelihood – someday.

Specially organized education (SOE) can take place at special schools but the law also allows a school to offer a SOE in the student’s own home. This offers opportunities to support difficulties such as social anxiety or to work towards a more independent life. The flexibility in what can be taught and where it is to take place is unique in the history of Danish education. 

The SOE-Agreement was amazing, but also expensive. Now, 10 years after the adoption of the SOE-law, the reality is that local governments are reluctant to take SOE offers from other local governments. It is very difficult to get an SOE-education in small communities because there are only enough kids with special needs to have one SOE-school. Children with all types of disabilities are mixed together and the schools have a very low rating. Often they need more time and expertise to handle the young people’s need for support, and it is not rare to hear about youngsters who take an SOE in front of a computer. Most young people get the regulatory curriculum but it does not match what happens in real life. 

It was the best of intentions and there was a unique plan, but the will to implement the plan and to be inclusive, by investing in the people who need something other than a standard solution, proved to be too good to be true. 

The road from disabled to criminal

Crime in Denmark is generally decreasing but there is an area that has grown rapidly in recent decades. These include crimes that fall under our penal code 119. This code makes threats and violence against support staff and professionals a criminal offence. People with disabilities are often sentenced to treatment rather than getting a punishment under this particular Criminal Code and this has multiplied since the 1980s. People with cognitive and /or a psychiatric conditions are often sentenced to special measures for up to 5 years for a criminal offense that others would have received a fine for.

Many of the autistic people sentenced to treatment find themselves in this situation due to well-meaning but ignorant staff that don’t have adequate skills or training to support autistic people. Avoidable instances of perceived threatening language or behavior, which result in the autistic person being sentenced to treatment, are unfortunately something we see more and more.

To avoid vulnerable autistic people being unnecessarily punished, we as a society should make sure that professionals receive increased and improved support and training. Staff needs to be prepared for the job, have the time to build relationships and an environment around them which is filled with professional pride and competence. These are the kinds of environments we need but we unfortunately see less and less of them.

Employment

One of the true signs of inclusion into society is when people with different skills are integrated in our labour force. A job is a way of recognizing an autistic person’s skills as being valuable to society.

Only one in ten autistic people in Denmark have a job . That is far too few and is an unreasonably low percentage. The reason for the low number of employed autistic people may be the employment policy, which provides work placements for disabled people within companies, at virtually no cost to the employer. Originally the point was to encourage companies to view a disabled employee as an asset to the firm so that they would hire that employee on regular terms – but that was not the case. 

On the contrary it has resulted in disabled people being considered as free labor, as though companies are somehow doing society a favor by employing them for a period of time. That means disabled people are performing a job at a company without getting paid. They don’t get ordinary jobs, but are maintained in unemployment even though many of them actually go to work every day.  

The elderly are overlooked

Until now older autistic people haven’t really existed in our consciousness. The last few years we have been busy defining autism in girls and distinguishing autism and personality disorders. We have overlooked older autistic people.

When a disability is invisible you will often only find the traits you're looking for. Although we have known that the children and young people we diagnosed as autistic 50 years ago would be elderly at some point, we have shown no interest in them. Therefore we lack the knowledge of how autism is expressed by them, in situations that are conditional to their age. In 2015, five recognised institutions for older autistic people took the initiative to research their own practice.

Despite the fact that only two thirds of the institutions have completed their research so far, the project is an eye-opener. Evidence suggests we interpret the signs we see from our own neurotypical frame of reference regarding growing old.

The evidence coming out of the research so far suggests we:

•    overlook life-threatening diseases like cancer
•    overlook problematic relationships such as anxiety towards a roommate
•    overlook the need for relationships
•    fail to see that people are still evolving and have individual personalities with individual needs when they reach retirement age 
•    interpret signs of dissatisfaction as age-related problems
•    interpret frustration as dementia, and lack of motivation as a sign that the pace must be slowed down.

We should be examining more closely how the person functions socially, and find out what makes sense for this particular individual. Everything indicates that there is much room for improvement!

Denmark is a very small country with just 5.6 million citizens. And the fact that professionals, who specialize in autism, have nationwide communities might be a product of that small size. People get to know others all over the country when working in the field and taking the time to specialize. The best professional communities arise when there is an acknowledged need and sharing of knowledge.

Date added: 12 January 2017


 

The National Autistic Society offers international professionals a wide range of consultancy, professional development and training opportunities. For further information see the National Autistic Society website or email the training team.

Comments

Cos Michael

Fri, 27/01/2017 - 14:35

Thank you Heidi, for recognising the problems faced by ageing and older autistic people. I speak about this at conferences and it still seems to come as a surprise to some, that we grow up and grow old and can still be autistic.

That our skills, health and social welfare needs develop through the lifespan is nearly always overlooked by researchers. Studies of "adults" rarely include anyone over 40. This means that connections are missed, between how autism impacts our mental and physical health over the decades; and the ailments we may suffer as we grow old. Eg, linking high levels of anxiety to high levels of gut problems in middle and later life, etc.

I also worry that stress and meltdown will automatically be assumed to be dementia related, now my hair is grey.

As we grow older, we often need to lean more on health and welfare services which are totally ignorant about us, mainly because they lack evidenced information about the health and social welfare needs of ageing autistic people.

The idea of generic residential care, where my autism is not acknowledged, is possibly my worst nightmare.