Program Time & Date

Developmental Disability Specialist, Mental Health and Welfare Division,

Ministry of Health, Labour and Welfare
Thank you, ladies and gentlemen. Dr. Shore, welcome to Japan and all of you, welcome. Dr. Shore was very good at sticking to the time. I’ll try my best to do the same, so let’s get started.

About the Act on Support for Persons with Developmental Disabilities, the purpose of the Act on Support for Persons with Developmental Disabilities is ① to identify developmental disabilities at early stages, identify the responsibilities of the central and local governments for providing developmental support and ② to provide support for overall life in order to contribute to independence and social participation of persons with developmental disabilities so that those people who were not able to enjoy such services can now enjoy the services.

The Act defines developmental disabilities which have not been covered by the system and for which necessary support has not been reached such as autism, Asperger and other pervasive developmental disorders, learning disorders, attention deficient hyperactive disorder and other similar disabilities. It also includes those with intellectual disabilities, as well. Other similar disabilities of brain functions, this includes for instances Turret’s syndrome, et cetera. When you go home and try to explain to others about developmental disabilities please remember that such disabilities are also included.

As for the measures we are taking at the Ministry, they are based on this Act.

Number 1 is to form an effective network of the relevant areas in local governments, given that persons with developmental disabilities need a broad range of support to establish community-level support systems.

The age at which family members and others first notice developmental disabilities could vary because the spectrum, as Dr. Shore mentioned, is very wide. Sometimes early detection is possible. Other times, only after becoming an adult does one notice developmental disabilities. If just one office within the government knows about such a condition, such a person is not enough because it could also involve older people, as well. Our aim is that all of those involved at the offices concerned knows about developmental disabilities. That’s the purpose of establishing support system in the community.

Number 2 is to identify effective support methods through projects and studies, promoting them through various meetings and promoting provision of support, given that standard support methods are not adequately established or spread out in terms of support for persons with developmental disabilities.

About establishing a standard support method, at the moment each organization in each area and region is improvising about how to provide support to those with developmental disabilities. I don’t deny this situation but because there are so many differences and variations sometimes it’s not convenient for those to be supported. Also, because of the related confusion sometimes support cannot be started. Therefore, the idea or objective is to establish a more standard way of providing support.

To provide information through different means, currently some information is provided through websites but there are people who do not have access to websites such as older people, et cetera. Not just through websites but through symposia like today, brochures and other media we want to provide information. That’s our plan.

Number 3 is to cultivate human resources who will provide support as the core of the community and take measures to extensively adopt human resources, given that there are an inadequate number of experts who are capable of responding to persons with developmental disabilities and their parents and guardians. About human resources, there are a number of issues and challenges here, as we see it.

First, what is good and effective support? That means people who know about what they are, who can actually implement such support and can communicate about that to others. This is the kind of human resources we are after. Also, one does not have to be a professional. There are many people in this world who are working very effectively together with those with disabilities. We want to encourage such people by coordinating on how they’re doing in their job well and what is particularly good about it. We want to encourage and to motivate such people.

Thank you.

Efforts of Employment Support for Persons with Developmental Disabilities
Hiroki Ichikawa

Specialist in Employment of Persons with Disabilities, Disabled Worker’s Affairs Division, Ministry of Health, Labour and Welfare
My name is Ichikawa from the Employment Measures for the Elderly and Persons with Disabilities department of the Employment Security Bureau. The measures and services that those with developmental disorders can use, including help with work, will be the topic of my presentation.

Hello Work is a facility that will assist people in being placed in jobs, so this is a facility that is related to employment. These are the measures to promote support for people with developmental disabilities. As was mentioned by Mr. Hizume, support for persons with developmental disabilities has been implemented. Hello Work, as the local assistance facilities, had been providing support in this area.

Within this role, there are people who have difficulty in maintaining employment. The target of this is to assist these people. Even those people who do not have passes for disabled persons can be covered by these measures.

There are counters at Hello Work that can provide assistance to people with disorders. Expertise and assistance can be provided at least for understanding the disorders. There is also a trial employment system where they can be employed on a trial basis for 3 months. Yesterday we had the budget passed in the Diet and we can tell you that we can promote this measure. We will be targeting over 8,000 people.

The third point that is listed on the right-hand side is about assistance. Fourth, we are looking to expand assistance after employment for persons with disabilities. On the left-hand side, you can see that there is assistance very specifically targeted to people with developmental disorders. The first part is an employment program and communication skills for young people requiring support.

We have issued evaluation reports and when it comes to welfare for disabled people there are some people who are not covered by any of the measures. For example, if you take the example from questionnaires for parents with children with learning disabilities, almost 20% of them go to special schools. The remaining children go to general schools. Once they graduate, they will hope to gain employment. In many cases, they might have been doing fine at school but they have difficulty finding jobs in the first place. Once they are at the workplace they cannot adapt and they will change jobs or leave their jobs. Some may withdraw from society or they may fall into depression.

We do have assistance measures for young people who are not able to adapt to their workplaces. Among them would be people with developmental disabilities. This measure started this year. This is not specifically related to the specialist counter at Hello Work. We will have people with expertise at the general counter of Hello Work so that we can identify people who have not recognized their problems themselves. There will be a referral to specialist facilities. In some cases, people do not want to be supported through a specialist. In that case, there will be measures provided that are suitable for that person within the general framework of assistance.

There used to be people who were not covered by the traditional measures for people with disabilities. In order to cover these people, we established this employment program for the young requiring support in communication. For those people who have disabilities and have difficulty finding employment, we will be providing special support to the people who are working at the Hello Work job placement counters.

For employment assistance for adolescent people, we are at the stage where we have just collected the know-how and some case studies. We want to expand what is being done now. We only have 6 nationwide yet. However, we have our counters. We have insurance people, medical people and people in education. All learn through seminars what assistance can be found for employment of people with developmental disabilities.

We also have seminars for people who run businesses. We teach them what kind of support can be provided to people with disabilities. As is written on the bottom of the page, persons with developmental disabilities may have the opportunity to report on the difficulties that they have faced. By listening to those stories, the people who provide assistance will learn about what kind of support can be provided.

I have mentioned that there are 6 centers nationwide. The Labor Bureau in those locales will work with the Hello Work counter. Business owners will also cooperate with the people at the Labor Bureau and Hello Work.

We do have assistance provided through the Japan Organization for Employment of the Elderly and Persons with Disabilities. How can we develop careers that are suitable for the particular persons involved? That is being researched now.

That was a brief look at the measures that we have to promote in employment assistance. Thank you very much.

Establishing Consistent Support of Education and Treatment
Kunio Yoshino

Director, Medical Care and Educational Support Center for Children with Developmental Disabilities (Nishitama Ryouiku Shien Center)
I have included a summary of my presentation. After having prepared this, Dr. Kaga’s presentation turned out to be exactly the same as what I prepared so I’ll leave other complicated matters to her. I will just talk about our experiences from the field.

I want to emphasize today how difficult it is to prepare people so that they can become employable. Those people with a high functioning condition have been hurt and beaten up throughout their life before reaching the stage of being employable. That being the case, it is rather difficult to cope. If we want to talk about and think about successful employment, we need to start very early in childhood to prepare those young people for the labor market. I’ll try to be brief. The most important part of my presentation is to show you a video showing you the children that I work with.

First about diagnosis and detection, I’m sure this will be discussed again later. Most of the children with low functioning ASD are diagnosed before they start primary school. In some areas, they are regarded as intellectual disorders or disabilities but mostly through periodic official medical examination by the time they start school they are already diagnosed.

However, in the case of high functioning people detection comes later. Sometimes it is detected at a year and a half but sometimes because of attention deficit they are detected at school or because they cannot cooperate. They can be even older before they are detected. For many people, it’s difficult to identify where the problem comes from. With a clearer understanding of the features of these high functioning people, I believe earlier detection can be hoped for from now on.

What is the educational training that should be provided to these people? I’ve always been thinking about this. This changes with time, also. I believe the most adequate way for now is what the SPELL that the British Autism Society is advocating, be it high functioning or low functioning.

In the case of low functioning, first I’ll talk about introductory family guidance. That used to be my dream in the past. In the community, during the infant stage screening medical examination they are detected but that’s not good enough. The mothers need to be guided. They need guidance. Without being fully prepared for that the training starts, especially in Tokyo. Without having enough understanding of what autism spectrum is parents have to start training. They try to get information from the internet. They become very concerned, over-worried and confused. It should be the municipality taking responsibility to give introductory guidance to the family members. That should be done.

About the medical and educational model, there are a number of different models applicable for how to develop capacities and capabilities. Americans and Europeans talk about how to organize things, to enable independent living and also to foster capacity for interpersonal relationships. Also, it’s necessary to continuously monitor development. Monitoring is very important.

For this, there are a number of support systems for high functioning people. Basically it’s the same but in terms of cognition and learning a lot of support is necessary. It’s also necessary to try to foster the children’s pride because during young adulthood I think Japanese children get very hurt mentally. I was in Delaware recently. I was talking with Andy Bondy in Delaware. School refusal is not a problem at grade schools and middle schools there but in Japan 1 out of 10 children refuse to go to school. Truancy is a problem.

We need to introduce a support model to encourage development so that children especially will respect rules and also logic. Depending on whether a child is influenced more by emotion, logic or rules (depending on the child’s personality and characteristics) the support must be designed. Also, the family’s mental health is of utmost importance. How can the mental health of the family members be achieved? That is another important aspect of the necessary support.

Now I will show you the children I work with.

This is about scheduling or structuring. At this point, he was a low functioning child. Structuring is done a number of different ways. He is about 4 or 5 years old.

This is how we work. Support for structuring now is done in the form of homework, at home. He is helping prepare breakfast. That’s one of his chores. He did this every day. He is now 18 years old.

If we turn to the next chapter, we see a handicraft or do-it-yourself session. Such skills are developed. Such activities will help parents to identify and understand the characteristics of their child. Also, they can have fun together. This is a very severe case but the father is working together with the child. This is a small group playing.

This person is high school aged with very severe disability but he can use a washing machine. He is quite capable. He does his own laundry.

He cannot speak at all so special methods (PECS) have been used for communication. He is currently selecting a snack. This is a vegetable garden. He loves to work. Although he has a very low IQ, he is already working. His IQ is below 50 but he is working in Chinese restaurant.

These are children with high functioning Asperger doing a small group activity. For Asperger we also need a high structural approach. They are very good at manipulating machines like this so we set a very ambitious goal so that they can develop themselves to the highest standard and try to do everything as much as they can.

In the last case, this was the child you saw at the beginning visiting some facility and putting on a concert.

For high functioning cases starting at a very young age we ask the parents or the teachers to develop picture books like this for developmental use. This is another picture storybook that we use for support. This is a 5 steps method that the mother produced. Whenever this child gets a cold he tries to skip school. She’s trying to explain with this material that there are different conditions of sickness. Therefore, you don’t have to skip school all of the time.

There are a number of challenges. We have to come up with individual planning, et cetera. An educational program is necessary. Hopefully we can overcome all of these issues and challenges so that we can fully prepare children to be successfully employed.

Thank you.

Employment of People with Asperger Syndrome and High-functioning Autism
Hatsue Suda

Vice Chair, Autism Society of Japan

Executive Director, Keyaki-no-Sato
Good afternoon, ladies and gentlemen. We heard specialists talk about a variety of things. Today I am the only person to speak from the viewpoint of a parent. How should we interact with our children as parents?

Actually, for over 3 years we funded research of people with high functioning autism and Asperger syndrome. We picked 40 people over 20 years of age and 33 responded. We found various difficulties through that research. What kind of education or what kind of environment will the children be reared in? That will have to be considered since the children are small to have the children lead a fulfilling life.

In order to assist employment of these children, there is this socially abnormal behavior, interruption behavior, and these will have to be dealt with. Children themselves will have to be able to recognize those states. The parents might have to assist the children in being able to do that.

The basics of relationships with the children are to establish a relationship based on trust with the parent. That trust-based relationship will have to be established. From the Autism Society of Japan a book called “Kagayaki” will be published soon. In it there are examples of parents with children 15 to 43 years of age. According to the questionnaires given to these parents, washing dishes with the children, cleaning the house with the children and having activities with the children related to the establishment of a relationship based on trust is important.

My son was a trouble maker. When we go out and ride on trains. Sometimes passengers are confused, like having their glasses taken away. However, from personal experience there is a lot for the children to learn about social interactions. A trust-based relationship will be established with a parent as the basis of the relationship. If the children do not trust their own parents, autistic children will not open up.

We also have to identify the difference in development compared to non-autistic children. Sometimes it is very difficult to understand the inner feelings of a child with autism. Why does this child think like this? What is the cause of this behavior? That will have to be understood. Once you understand that, the child will get involved with the parent may also be able to overcome difficulties.

In the cause of autistic people, they do have emotions such as anger, sorrow and friendship. However, when it comes to anger or sorrow they do have that feeling but they have difficulty expressing that feeling. Once they go out into the society there should be many cases when they feel anger or sorrow, so we need to create an environment where they experience anger and sorrow and help them understand that feeling.

In having interpersonal relationships, we have to understand how the other person feels. In order to do that, the children themselves will have to understand the feelings of anger or sorrow. Of the respondents, many of them have been employed once but they were not able to have successful interpersonal relationships with their colleagues or with their bosses. Especially high functioning people blame it on others and build up a rationale saying that they are not in the wrong. From when the children are small, we have to teach them about emotions and how to understand others’ needs and others’ feelings.

Autistic children can use words but they only use words in a selfish manner. They do not listen to others, especially among the high functioning people. By training them, they will be able to more smoothly communicate with others. From when people are children, we should teach them to look others in the eye and understand the feelings of others. They should also be taught to explain to others how they feel and if the other is not convinced they should learn to give way to others.

As Dr. Shore and Dr. Yoshino mentioned, these people have strengths but even if the children are very severe they can have dexterity with their hands. In the longer-term, if we let them work on things we may be able to identify their dexterity, for example. We should try to link that strength to the types of jobs they can get.

However, as I mentioned before, we have to teach them not only to think about themselves but what the friends or colleagues feel or need, as well. That kind of communication will have to be taught.

This is not included in the summary but at the Keyaki-no-Sato we receive subsidies to run our workplaces. There are severe persons who have almost no IQ. There are 2 persons with mild autism. These persons work in a group to produce pallets used for transporting things with forklifts. As was mentioned by Dr. Shore, they can be taught to have eye contact. Their instructor, through work and daily learning, can teach the children how to produce the pallets. The children are able to do that no matter how mild or severe they are. They have some characteristics of autism but those difficulties may be overcome and by doing so they can go out into society and get jobs.

The Developmental Disorder Assistance Center and facilities like these can provide help for these autistic people. That will be the basis of people with autism getting stable jobs. I may be repeating myself, but they need to acquire skills necessary for social life and they need to build resistance or strength to overcome difficulties when they face them.

When we established our facility there were a lot of objections. It took us 7 years to build our facility. It may be difficult to get these people access to employment. We have to change society and at the same time we have to teach the children to have pride and overcome difficulties. I believe getting employment would be one of the ways to achieve those skills.

In the summary, there is some reference material on the research that we did on employment of high functioning autistic people. We will be able to understand how difficult it is to have high functioning autistic people get jobs. Please read more.

Thank you very much.

Self-help Group

　

Morio Minta

Psychiatric Social Worker

He is with Asperger Syndrome

Sometimes I come across a website where people are asking, “What is the most suitable work for people with developmental disabilities?” I don’t think there is any. It’s just the same as asking, “What is the most suitable job for neurotypicals?” In other words, there are many varieties amongst those with developmental disabilities. Some people have communication problems. Others have execution function issues. Others don’t. Some have hypersensitivity. Some do not have that. However, there is some inconvenience and that seems to be the commonality. I am here as a person with Asperger but even with the same diagnosis there are many other people who are totally different from me. Please understand what I’ll be discussing is just my experience.

I represent a self-support group of adults with a developmental disorder in Kyushu. Four years ago we started holding meetings in this group. Every year we have a different representative. I am the current representative. My main job is to organize the meetings and prepare materials. As an officer, I am in charge of public relations, publicity, accounting and also some of the administrative work such as securing meeting sites and post office boxes. Currently 4 of us take care of that. We have meetings in Fukuoka city about once a month but starting this year we will be holding meetings at the Kumamoto chapter, as well. Aside from holding meetings we sometimes go out on the town together drinking but all of the participants are volunteers so we do not hold seminars or come up with publications because that would force people to do more work.

We had rules really before starting the group. We have this meeting handbook that talks about all of the rules for the meetings. We selected the topics of meetings and developed a website. These were started by people who are experienced in this area with other support groups. That’s why its going well now and our activities are effective.

The purpose of our meeting is to provide a place to be and share wisdom with each other. In the case of other support groups, they sometimes aim for recovery but that’s not our case. We meet to be assured that we’re not alone, to sympathize with each other, to complain to each other, to be comforted and to share wisdom as to what should be done so that things will go better so that we can solve, even a little bit, the inconveniences. Also, we manage to be able to improve our self-esteem and accept ourselves as is. It seems that the people participating in meetings become more and more positive so I think it was a good thing to start this group.

Now let me cover all of the developmental disabilities in general among the membership. The recent trend is that there are an increasing number of people members who are diagnosed with Asperger. This is probably because while they have interpersonal relationships at work, et cetera, they start suffering from depression, for instance. As a result, during treatment they end up being diagnosed with Asperger. We do not have anyone with ADHD. Those people can manage without such group participation because they can go out together with friends or colleagues from the workplace. There are people with learning disabilities and they are often unemployed or having difficulties at their jobs. Several people in our group have a disability pass, amongst them some with Asperger. For many disabilities on the autism spectrum I believe some form of public support is necessary.

People with Asperger, they often have a lot of problems even with work. They are often just barely hanging on to their job, just being given manual or side jobs. As for myself, I am not very good at understanding others’ situation or understanding what people are thinking or how they feel by just looking at them and their facial expression. Sometimes I say things so casually which are insulting and so became unemployed.

My biggest problem was that I did not understand why we get paid when we do a job. More specifically, I did not understand in the past that companies are there to pursue profits. For that, work should be done efficiently and there are several sections in a company. By allocating appropriate people to a section, work can be done effectively. Work is ordered by a client from the company based on contracts. Responsibility lies not with each individual but with the company. If you have a problem with your day-to-day work and if your work seems to be overflowing you have to discuss it with your superior and make sure that the necessary measures are taken so that the contract can be fulfilled. If you are doing something unsure then that could be a problem for the clients. You have to make sure to discuss this with your boss and other people and get help. It’s all natural and taken for granted but I failed to understand this in the past. In other words, I did understand how money flowed. I did not understand that and I only thought that by going to work I was able to be paid.

Having now understood that, I have made efforts to take initiative as a member of society and observe society’s rules. I tried to convey using words what I am feeling and what I was thinking about and things got better.

I don’t know if this will apply to other people. When I got my job was 19 years ago. Compared to that time, with the collapse of the bubble economy now it seems that there is a lot of stress at work sites even for neurotypicals. In the past I recall people laughing very happily and loudly at job sites but nowadays we hardly see that. Even the neurotypicals are having a lot of difficulties at work so it will be very difficult for someone with a developmental disability to maintain their job.

Recently a number of measures have been introduced such as job coaching, indirect support and also to give support to the employers based on disability passes. Sometimes in the big cities companies are competing for people with disabilities but in the local areas more recently the grants under grant system for employing persons with disabilities is limited. However, I believe now a bill is submitted to the Diet to expand the scope so maybe it will get better soon.

We need to try to do everything we can on our own but sometimes it’s difficult to try to accomplish something by oneself, so we do need a system where we can get support anywhere it is necessary. My dream is to establish a system which can insure more than 5 million yen for an annual budget. If each one of us can capitalize on our abilities, I don’t think that this is too difficult a dream to fulfill.

Thank you.


Medical Diagnostic Treatment and Support of Autistic Spectrum Disorders