Program Time & Date

Makiko Kaga

Director General

National Institute of Mental Health, National Center of Neurology and Psychiatry
Thank you for the introduction. As a pediatrician, I have seen patients with developmental disorders. The first patient that I saw is already over 30 years old. I am a pediatrician but I still have the opportunity to see people who are over 30 yeas old.

Recently with regards to autistic spectrum disorders, when we make a medical diagnosis, the DSM-IV by American Psychiatric Association I or the International Classification of the Disease 10, ICD-10 by the WHO is used. Based on the current criteria listed in these, the particular individual is diagnosed depending on how many criteria are met.

The autistic spectrum disorder looks at individuals as a continuum. There are various ways to consider. Pervasive developmental disorders as listed in the ICD are almost synonymous with autistic spectrum disorder, I believe. Characteristic features in social interaction, communication, behavior, interests and activity patterns should be seen in autistics before 3 years of age. If they cannot be explained by any other disease, they will be diagnosed as autistic. However, because these items are qualitative, diagnosis depends on the physician’s experience and capabilities.

I am belong to a hospital, so I call them “patients” in many cases but I know there is some controversy about the word “patients.” We see them as out-patients and look at their condition, their history of development and their interaction with their families. All of these findings will be considered at in making the diagnosis. We look at interpersonal relationships with their parents and unfamiliar people to them, how they can look the other persons in the eye and the expressions that they show. When I ask questions on an out-patient basis I check whether there are new, unexpected and surprising responses.

At our out-patient clinic, we have a carpeted room that is about 30 square meters. We have some toys in the room. This is the case of a 3 year old child. This boy has connected 3 meters of these blocks all placed in the same direction. We also ask the children to draw pictures. They are very good at pictures but they give some strange impression. Because on the left, you see a 9 year old child’s drawing of 4 children with no eyes. On the right side is a 12 year old boy’s drawing. His IQ is about 130. This drawing is also strange. It seems that the perception of the body image or the sense of people is different. It’s not that all children draw the same pictures. We look at their behavior in the out-patient clinic to make the diagnosis.

There are many ways to look at it, whether this is a disease or not. There are cases where autistic symptoms are manifested along with other diseases. I check whether they have any of these diseases listed here, for example tuberous sclerosis, fragile X syndrome and whether there is a history of infantile spasms. All of this will be asked about to the parents or guardians.

Sometimes people show symptoms very similar to those of autism as a sequel of encephalitis. Looking at the child and taking precise developmental history may be sufficient to diagnose autistic disorders. However in many cases we do tests to evaluate children. For example, we do standard intelligence tests and other cognitive function tests. Often an autistic child is not able to recognize something properly and because of that, they may have difficulty in their social lives. We do a variety of neuropsychological and physiological tests to evaluate their cognitive functions.

We also have checklists to look at their mindset. Of course, we do not do all of these tests for all patients. It depends on the requests of the parents and on the state of the children and we will determine which tests are to be run to each child. About half of all autistic people have abnormal EEGs. Depending on the status of the patient, we will do brain imaging tests. We may look at functional brain imagining to see how the brain is functioning while they are doing something.

These tests give us some hints about what kind of responses or measures can be taken for helping these patients. This is called a social story test. We ask patients to respond whether these particular behaviors written in a certain story are appropriate or inappropriate .in a particular context.

This is an example story of a 19 year old lady. She slept late and therefore she skipped breakfast and ran to the airport to take an airplane. Is this appropriate or not ? I think this is appropriate for her. However, because she did not take breakfast she was very hungry. On the plane when the cabin attendant came to serve lunch, she ate up everything that was for her. She found a child sitting across the aisle from her who was not able to eat all that she was served. This 19 year old lady leaned across the aisle to ask her father if she could have the leftovers from that young child. In the case of this lady, this may be inappropriate.

These kinds of tests are done for checking on the condition of the patients but we can also use them as a work-book for the autistic people. Mothers are persuaded to create stories like this kind and to make their children read and practice how to behave in their daily life.

We also look for epileptic symptoms in them. Autistics seem to be difficult to differentiate familiar or unfamiliar faces. We ask autistic children to look at their own faces, their mother’s face, a stranger’s faces and objects to examine this impression and recorded EEG. during those sessions. In the case of normal adults they respond most to their own face. In typically developed children response to their mother’s face are most prominent. However, in autistic children with high IQ their response to any kinds of faces was the same amplitude, though they can actually differentiate fasces themselves. This part of the brain may not be functioning appropriately.

From outside, their hurdles are difficult to be understood. We would like to apply those results for helping autistics in their daily lives. Medical treatment and educational training are the cooperative way to help autistics. Currently we cannot cure autism by pure medical treatment. However, we do have ways for their best possible lives.

Earlier diagnosis and treatment is the principle for any kind of diseases. However for autism and developmental disorders, the earlier the better method may not always the best. “Timely” diagnosis and treatment may be more appropriate. Their symptoms and their environment is differ from patient to patient. The diagnosis should be accompanied with the opportunity to take the appropriate action for the child.

In many cases, autistic people have the complication of epilepsy and in that case we can treat them with medicine. There are various drugs for behavioral problems. We have to be careful of the side effects but when you give these drugs in a timely manner they can be very effective. Antipsychotics or antidepressants can be used depend on their symptoms and their problems. Many autistic patients have sleep disorders and the ordinary drugs may not work. Melatonin seems to be effective in many patients with autism. In the United States you can buy melatonin in drug stores but in Japan it is not approved as medicine by Ministry of Health, Labour and Welfare..

Of course, education, training or appropriate intervention is very important. I will not mention about these details because other panelists have already stated upon that. We can take measures to respond to the behavioral issues and also we can try to characterize and utilize upon their good points. We have to consider how to improve their daily and future lives.

In many cases, autistic people have very good at visual concept, so we may be able to use that strong points. Dr. Oya of Asahi Central Hospital taught me about this list of treatments of autism. Some of these are appropriate measures and many of them may be inappropriate. No chemical substances and no diets have proven to be the cause of autism. The cause of autism is unsolved. There have been so many “therapies” because there has been no proof for the only and the best treatment for autism. I have to say that some of these raise a lot of concern and suspicion.

For the families, these people are ready to grab at any opportunity or any possibility of treatment. We want media people not to throw unfounded therapies and to confuse parents.

For autistics with high intellectual ability, social skill training is necessary. They may need to practice how they should behave under certain conditions. Appropriate diagnosis should be made in a timely manner. They should be surely educated. Health management is always important. In order to be able to work and to study, they need to be healthy. In many cases, autistic people experience weight gain, especially immediately after graduation from school. We need to take measures against that. Including that, we will have to manage their overall health and self confidence so that we can assist them more in getting their job. We need to increase the number of people who understand their characteristic way of thinking and behavior.

Thank you very much for your attention.

Moderator Fukatsu: We are now joined also by Dr. Shore. We will have a discussion on the topic of employment. After that, we will take questions from the floor. Today in regards to persons with developmental disabilities education and employment was discussed throughout their lifespan. As Dr. Yoshino pointed out, we have health examinations, educational training and then moving on to employment in the process. Especially after graduating high school or higher education, even for neurotypicals trying to find a job will be one of the most difficult changes in life. How to cope with that and deal with that I believe is an important subject of today’s discussion.

Today we heard from the government’s side about welfare support and employment support. We heard from two specialists from the government. Then we heard from physicians and about educational training and support. Then we heard from actual persons with this condition and their families. We heard their experiences. Dr. Shore in his presentation touched on having Asperger himself. Also, he is involved in research in this area, taking a special interest in this area. We had reports from many different viewpoints. Therefore, I believe that our discussion will also be very valid.

Before we start the discussion, Director Takaki from Chichibu Gakuen Institution is also participating. Her school is in Tokorozawa, in this prefecture. Today she is a physician at a developmental disability clinic. She is the director there. Perhaps we can hear a little bit from her point of view being a director and a physician. Do you have any impressions from today’s discussion or anything else to say?
Takaki: Good afternoon. I am Takaki. As was introduced, where I am at National Chichibu Gakuen Institution there is a specialized outpatient clinic for developmental disabilities. Dr. Kunio Yoshino started this clinic in 2000 at the Chichibu Institution. This is a facility that accepts people with intellectual disabilities. Capitalizing on that experience, there has been an emphasis on the educational development of those with developmental disabilities. Now I have taken over his position and I’m involved in the actual practice or treating these people. What I feel most in my experience is the tremendous burden on the part of the families.

At our Institution currently there is educational training for preschool children. Also, this year we are starting a program where we dispatch our staff members to schools to create good environments for such children. However, even with such help extended by us, perhaps this will make the family’s burden just a little bit lighter.

The question is who will actually be doing this? It’s the family members, so I keenly feel that what we do is only the tip of the iceberg of what’s necessary, actually. Every day it is a big headache to understand what we can do to lessen this burden for the families. We feel at our Institution that various institutions involved in the community will have to collaborate together to solve this problem. For this collaboration and networking that is necessary, the family members are also working in this area to get the most information. Hopefully such burden can be shared by different institutions and centers.

We have early detection during preschool age and at the infant medical examination. We should also consider what should be done at nursery schools, kindergartens and daycares and link that to school age children. So far all that was necessary has been taken care of by the family members, which is a tremendous burden. We keenly feel that this is a big problem and difficulty for the families.

As the director of the Institution in this area, in the Tokorozawa community it is necessary to be working together and networking. We are determined to do our utmost and will make my personal contributions to the utmost, as well. I will continue to ask for your help and support so that we can make this a very effective network. Thank you.
Moderator Fukatsu: Thank you very much, Dr. Takaki. Now we would like to have some discussion among the panelists. You probably have questions for each other. Is anyone willing to break the ice? Does anyone wish to add something that you were not able to mention in your presentation?
Hizume: I have a question for Dr. Shore and Mr. Minta. Before I joined the Ministry of Health, Labour and Welfare, I was in Nagano Prefecture at the Mental Health Center in charge of an adult group comprised of adults with mental disabilities. In the group some of the members said because their colleagues were working hard and making efforts, they should do the same. Today you were talking about becoming an adult and starting work. Dr. Shore talked about in his book a guide for self-advocacy and also Mr. Minta talked about his self-help group. In either case, I believe it is very important to get help from your colleagues, from your peers.

My question is how can you find your friends and how should you associate with such friends and peers? We always think in terms of extending support from authority or whatever but I think support amongst people in a similar situation is very important. How can you find such people to help each other and how can you associate in an effective manner so that it can be maintained?

Shore: There are two parts to my answer for this question. One is that finding friends is pretty much the same as for everybody else. You find friends through getting involved in favorite activities, in activities you like to do. People who are interested in computers can join a computer club. Those who are interested in various sports may join a team or a volunteer group of people who are involved in these sports. People with various interests tend to congregate together.

For those of us on the autism spectrum, the same holds true. The difference is for us it’s a little bit more of an extreme. People with autism tend to be much more successful when gatherings are activity-based rather than gatherings that are socially based. Again, it may be a computer club if that’s an interest or a group of people who get together to swim. That may be another interest. By gathering together and by going to activities such as this you increase the probability of finding people who are of like mind. If they

The other way, which should be done in addition, is to get involved in organizations relating to your condition or situation. It’s not necessarily a disability. That means making contacts in our case with other people having Asperger syndrome or autism. These days with the availability of the internet our network can easily be worldwide. It’s just as easy to e-mail somebody in Pakistan as it is the person next door. Getting involved in local groups, if there is one, is a great idea as well so that you can have physical face-to-face contact and do things.

I guess one other thing I would add is that it’s also important to make friends who are not on the autism spectrum, to make friends with people who can be allies, who can advocate on your behalf if needed, who can help you understand when challenges present themselves in the workplace and other social situations. Getting involved in these three areas I think will go a great way towards building a support network for people with autism.

Moderator Fukatsu: Mr. Minta?
Minta: I have participated in hobby groups. I talked about self-help. There is a limit to what they can do. There are some people who will be able to assimilate into that group and those who will not be able to assimilate into that group. If you are not able to assimilate into that group it would be stressful, so you should not be there. However, in our case the situation is that there is no other group. If there are multiple groups we will have a choice but if there is only one group there is no way that everybody can be accommodated. Therefore, we have to create more self-help groups.

As I mentioned, we have made preparations. We have to study how the group can be operated or managed. In my case, I worked with another person and with that person I participated in another group. We did understand how a group should be operated. Even if we faced problems, we were able to observe that and face that. We had the experience that allowed us to do that. Without that experience, it would have been difficult.

I heard that 70% of alcohol and gambling-dependent people have a tendency for developmental disorders. Before they reach the age of adulthood there needs to be some education to prevent them from becoming dependent. Among those with developmental disorders, there are people who carry out inappropriate activities. We need a curriculum to assist these people and we need assistance in managing or operating our groups. It doesn’t have to be public assistance. It can be assistance given by volunteer groups or other groups. There are some measures that do create a support system for that.
Moderator Fukatsu: Thank you very much. Was your question answered?
Hizume: Thank you very much. I have an additional question for Ms. Suda. I think you talked about working with others to assist people.
Suda: I talked about Keyaki-no-Soto where 90% of the people are autistic. I have been running this facility for 23 years. In the beginning, there were many, many difficulties. We took the people out into the outside companies.

We visited companies. The autistic people by seeing this facility or seeing the companies at least have been able to understand what it is like to work.

After 5 years we decided to establish a workplace within our premises. We established a workplace or factory where people can work. This work-making pallets seemed to be dangerous so it must have been very difficult for the people teaching them. When they see others working they would feel like they should work themselves.

Assessing the severe people, they are progressing well and they are looking at others who are doing well. They have made improvements and they are also good at enjoying their leisure time. They are very good at entertaining themselves. In the beginning when they went to karaoke they had to learn from the teachers but nowadays the children enjoy karaoke a lot. When they go back to their homes they tell their parents how much they enjoyed themselves even when they are severe. They even start dancing with each other.

As people working together, we came to have a similar mindset. These are people who didn’t know what it is like to receive a salary but now they are receiving salaries. They understand the meaning of working and they now have pride in themselves.

It happens that our workshop for autistic people is the only one in the world. It accommodates 20 people. Last year the sales were 120 million yen. They received salaries and they do not have to receive assistance from their parents. They can accumulate pensions for handicapped people. It is for me like a dream come true. When people go and visit their factory or their workplace, all of these autistic people will come out and say, “Welcome to our facility!” As necessary they will use English. If among the visitors there is a Korean person or Chinese person they can at least say “welcome” in these languages.

They have pride in working and they take pictures. The visitors will take pictures of the facility. There are some people who did not get their pictures taken because they are just transporting wood but they insist that their picture should be taken, as well. I believe that Dr. Shore has been to our facility, correct? Yes, he has seen our facility. We should not give up on autistic people regardless of the severity.

Autistic people themselves can find friends among themselves. For high functioning people, if you do a questionnaire they really want to have friends. For the first 1 or 2 years they may have good friends but afterwards their relationships do not seem to last in many cases. It seems like making the relationship last may be difficult but overcoming various difficulties of autism from when they are young is very important. That is what I think.

Moderator Fukatsu: Ms. Suda, I think you said you had a question for Dr. Shore.
Suda: You mentioned that you have to identify the strength of that person and find a job that is suitable to that strength. What should we do for people for whom we cannot identify any strength, if we cannot find any advantages or capabilities that they have?
Shore: That’s a good question. I find that if I observe and study a person long enough I will find some strength. I will find something that if it’s not a strength that is directly attributable to a particular job there will be something that can be molded into an activity that will fit into some particular job.

Let’s just say for example you have a child or an adult who loves to line things up. What they’ll do is they’ll take a bunch of blocks and they’ll line them up on the floor. They’ll just keep going and going and going and going. If they hit the wall, then they’ll turn 90 degrees and keep on going. Just looking at that particular behavior, it doesn’t seem that there is much there. One thing I would start to wonder is might there be a way to take that affinity for lining things up (and of course perfectly in the way people with autism will line things up) and could that be translated into, for example, laying a set of bricks or stones that could be the boarder of a garden? This is how I would think about looking at something that a person with autism is doing and very likely doing it over and over and achieving some sort of pleasure. That’s how I would go about it. Arigatou gozaimasu.

Moderator Fukatsu: Is that OK? Dr. Shore talked about a child who loved to splash water from the faucet and enjoyed the sensation of water pressure. Abe from Keiai, do you have a question related to that?
Abe: I am Abe from the Keyaki-no Sato, the facility with autism. As a parent, I would like to share some comments or experiences with you. My child is 45 years old now. As Ms. Suda said, he is the severest case. He is one of the champions in that regard. In the days when he was young there was no mandatory education for people with disabilities so hardly any public education was given. However, we worked hard with advice from seniors and we learned from our child and gained educational training. In a way, I was experiencing something quite like your parents, Dr. Shore.

My child used to love playing with water. I was fully aware that he was enjoying the sensation of water pressure from the hose but we were living on the second floor of a building and if we flooded the floor, that would be a big problem for our neighbors. I had a big headache trying to figure out what to do and how to stop that. Also, he was very hyperactive. He was always moving around. Just in one second he would be gone.

I was looking for a way to solve these two problems. I could not prepare dinner or lunch because I had to keep an eye on him all of the time. In those days even the term “autism” was not so well-recognized, even among some of the specialists. I thought because he loves water why not work in the kitchen together? That was how I started.

First he would wash vegetables, potatoes, Chinese cabbage or whatever. Then he moved on to do the dishes but he didn’t know how to wash the dishes. He could do one thing but not in a continuous way as a process. So I broke down each action necessary and taught him each step that was necessary. For instance, I taught him to turn on the faucet and get the water and then stop the water and then the next step is to take the sponge, et cetera. I taught him holding his hands. It took about 2 years of working to be able to do this continuously. by himself He started at 5 years old and as Ms. Suda said earlier this helped to foster a relationship of trust between myself and my son, as an afterthought anyway. Although that wasn’t the main purpose of it, it helped us to trust each other.

What does it mean specifically? “Well, if it’s mother saying it maybe I can wait to do something. I really want to go over there but maybe I can wait. I really want to go, but why not wait a little bit because it’s mother telling me that, not somebody else.” I think he started to feel that way and think that way.

Then one thing would lead to another. We started with dishwashing and then doing the laundry. Then he would clean the rooms. I had to teach all of the actions one by one but he became capable of doing those chores. In this process, the child learned that he could do all of these things, which led to self-esteem. He was very proud. Then the characteristics and features of autism would be very helpful and effective because it helped him to lead a much more comfortable life.

However, another problem came up. It worked with me but not with other people. Dr. Yoshino was talking about starting at a young age. We had to work together with other families, sharing information from very early days. If that were available that would have been nice but in those days there was no such system at all. There was no networking, no nothing, so that was a big headache for me.

Finally, when the Keyaki-no-Soto group was set up, I found hope. They were operating earlier on without official approval. Then we introduced a system where each support staff held responsibility in each people We introduced daily chores. Also, we would visit different places. We visited this pallet factory and my child became employed there as a trainee in a crew. There they taught him how to remove nails. Over 3 months he learned that. Now he can do that.

What happened was after that interpersonal relationships between my child and the staff expanded immensely. He would trust staff members there. All of a sudden, very rapidly, with all of the other staff members and his peers working in the same facility this trusting relationship expanded and spread.

When we talk about employment it makes one think of officially visiting companies and being interviewed, et cetera. My experience is that being able to work also leads to being able to enjoy yourself in your leisure, as well. That’s what’s really necessary when you’re a grown-up. I think my child is really enjoying that. He is very severe still but he is carrying lumber in the factory and he is very proud of himself.

That is also reflected in how he lives in terms of rehabilitation. It has had an immensely positive effect. When he was small when I would scold him he would scream his head off crying. He would become panicky and bite people, et cetera. He lost that when he was about 10 years old. Now he would buy his favorite music CD and play with toys. With the support of his support peers, he developed that far.

To establish an initial relationship of trust is important. If you can do that there will be other people to support you and peers to support you. Although my child is a very severe example and although this is not a regular kind of employment, he is working from 8:30 to 5:30 in the afternoon and he can do that.

I have a request to the government about a job coaching program. As Ms. Suda said, the group starting in 1985 was prior to job coaching starting in the United States. This was introduced not just for regular employment but even for groups. Hopefully this program can be expanded so that people with severe autism could work and contribute to society and also in turn enjoy life and gain satisfaction. That is my request to the government. I was stimulated by Dr. Shore’s comments and therefore I gave my comments.

Thank you.

Moderator Fukatsu: Thank you very much. There are people who love being under high pressure. Maybe one of the possible jobs could be washing dishes. Mr. Ichikawa, do you have anything to add?
Ichikawa: From my experience as a job counselor, there is something that came to my mind. “Working” may involve having a job contract but that it may be that “a job.

It is an extension of your daily life. Nowadays, washing dishes is regular practical job training of special support school. At least in Tokyo, usually there will be at least one intellectually disabled person working in restaurants washing the dishes.

For the job coaching system, we are responsible for the employment area. Of course, we will be providing job coaching assistance so that they can get employment. One of the major missions is to move from welfare to employment. Qualified people will be job coaches. These job coaches, who understand the individual, will be providing advice.

Under the Act on Support for Persons with Developmental Disabilities there are some training sessions for administrator of rehabilitation services. Employment assistance is a very important part of that seminar. Job coaching is a methodology so we have people at the facilities that have learned that technique. The people will be able to get jobs that will give them higher income.

You talked about group employment. What we are thinking of now is for people with schizophrenia. They can go to the workplace, assist each other, maintain their health and do well on the job. There are already some systems or structures but we are doing some research and studies to make the system easier to use.
Moderator Fukatsu: Thank you very much. As time is running out on us, it is now time to take questions from the floor. Please wait for the microphone and ask your questions. We have panelists from various areas of expertise. The person sitting at the very front?
Murakami: Thank you for the very meaningful seminar. I am Murakami from the Tokorozawa-shi Teotsunagu Oyanokai and also I am involved in the soccer team of persons with intellectual disability. Let me speak about my own experience. A special subsidiary system for employment has now been introduced.

I did visit a factory the other day and there are over 30 people with disabilities working there. There is a person at the reception. There is a shop there and there is a lady there. This person will ask the name and birthday of each visitor. When you go there the second time that person remembers you and will say, “Hello.” If your birthday is close she will say, “Happy Birthday.” I heard that this person was not able to speak that much before but now she is able to speak smoothly. She asks for your name and birthday. Dr. Shore, are there any cases in the United States where there are people at a reception desk who will ask your name and birthday and they remember those names and birthdates?

Shore: There must be someone in the United States who does that but I haven’t encountered them. I think that’s a good link towards social interaction in a job situation. One thing I might think about is whether there is something else that you could link to you might say the vast memory bank of this person that they could comment on in addition to birth date. Maybe it could be something related to the clothing that they wore last time. “Last time I remember you wore this beautiful blue coat,” something like that, for example, but I think that’s a good start.
Moderator Kitamura: Thank you very much. Are there any other questions? The person at the very front?
Kuroiwa: I am a person with ADHD. My name is Kuroiwa from Saitama Prefecture. I think Ms. Suda mentioned that a high functioning autistic person in many cases have not been identified when they were young. When they grow up and get employment they may not be able to adjust to that environment and they may be fired. That is something that ADHD people experience. Because they were not careful when they were children or they were not trained when they were children, when these ADHD people become adults how can they adjust to their environment? What can they do themselves and what kind of assistance can others provide?

Moderator Kitamura: I’m not sure who to ask but perhaps we can start with Ms. Suda and if anybody wants to answer then please speak afterwards.
Suda: Actually, Dr. Kaga talked about the diagnosis According to the questionnaires, the parents do not care to go and get a diagnosis. Especially when their IQ is high, when they grow up to be junior high school students they become pretty violent inside their room. At that time, the parents acknowledge at last that there is something wrong with their children and they bring them to the doctor at that stage. However, when they are in junior high school that means that the child has grown up already to the extent that they have formed their features to a certain extent.

When they are abnormal since they are young and in the case where IQ is high but if there is a speech problem in the early stages they would do better. However, if the parents do not recognize the abnormality, if they are not accepting of the abnormality, there will be a problem. What is important is to accept the fact. That will have the largest impact on employment.

The parents seem to want to only accept the fact that they are good at something. They accept the fact that they are good, for example, in math but if they are not good in language or Japanese language they make the child work hard on their shortcomings. They push the children too far and the daily lifestyle forced onto children by parents may confuse the children. My advice is to see an expert or specialist as soon as possible.

When a person with Asperger goes into kindergarten they may be speaking normally. However, high functioning people may be speaking but they are only using a limited number of words. High functioning people and Asperger people seem to be different according to the results of the questionnaire.

The fact that the parents are not accepting of the fact is a problem. That may arise from the fact that the high functioning people they seem to be able to achieve a certain level of functionality. If they are intellectually handicapped from the beginning the parents are more accepting. However, when they find out after the children grow up to a certain age the parents are very shocked and the children will have problems after that, so it’s very good to detect early.
Shore: In getting to know Mrs. Suda and Mrs. Abe it becomes clear that one of the largest factors to success for children with autism (or with other conditions, disabilities or whatever you want to call the difference) is that both of these parents and mine as well accepted us for the whole persons that we were. At the same time, they recognized that there were in many cases significant challenges that needed to be overcome in order for us to lead fulfilling and productive lives. I think if we focus on the characteristics of autism, ADHD or whatever the condition might be without putting a value on it (not saying that it’s bad or terrible or even that it’s good but this is just what it is) then we find a way to use the strengths of people with autism to accommodate these challenges and lead a fulfilling and productive life.
Moderator Fukatsu: Mr. Minta ?
Minta: I would like to make a comment. Someone talked about ADHD. As you can see from my profile, in the past I was diagnosed as ADHD but now I am diagnosed as Asperger. I knew about Asperger all the time but because of the system I just let go. You need a physician who is capable of diagnosing Asperger. Then someone with any other diagnosis, if one has some verbal difficulties that would be Asperger most of the time. Although this is limited in adults, I think to have this diagnosis is important.

Also, many people are hypersensitive. Because of such a possibility, there are also sensory tests available. Society is providing that. I was tested last year. Increasing the number of people who can provide such tests I think is related to better employment. Thank you.

Moderator Fukatsu: Dr. Yoshino?
Yoshino: If I may add just one point, there is no specialist in education. Maybe we have missed that because I have a lot of questions and criticisms about education. With Asperger and high functioning cases I think diagnosis is necessary to protect their rights. For a better life, you need to understand the characteristics of these people much better. If you can do that perhaps they will realize that there’s a big chance that the person can lead a life that is different from other conditions.

Another problem is even if you’re diagnosed with Asperger in Japan, training for social skills and problem-solving skills are not taught at school. It’s not done. There is no such program at schools. Reading, writing, arithmetic and simple greetings are all that’s taught. How to interact with others, how to carry out a conversation and when to change the topic in a conversation should be taught from primary school all the way to graduation. A consistent program should be provided but what’s done is just a one-time session here and there. Then the teacher in charge of the class gets changed.

Someone who looses their job would come to us for the first time. Due to lack of communication capacity, they got fired, and also because of lacking common sense. Another thing that’s necessary is to distinguish between medical diagnosis and educational diagnosis. Medical diagnosis is necessary when it’s necessary, but for educational purposes we need to plan at which point this person needs a certain kind of education. For that, we need diagnosis. If the parent is afraid of their child being diagnosed as such then the child will loose all of the opportunities for being educated or being trained or they may be misdiagnosed and the disease name would never change. We should recognize that there are such needs and hopefully there will be better support.
Moderator Fukatsu: Thank you. Dr. Kaga, you are involved in early diagnosis and you have very long experience. Do you have any comments, please?
Kaga: Early diagnosis itself is not always necessary. However to make sure their guardians to know their children’s autistic character and the way of thinking to child-rearing is essential at the earliest stage. Basically, the sooner, the better, if diagnosis is along with treatments. The question is how can we tell them whose child is autistic? At first we discuss with the parents that your child has this kind of tendency and characters. That process would make the parents prepare to be able to accept the medical diagnosis, as well.

Just an early medical diagnosis, giving a disease name at very early infancy, is rather harmful. To facilitate the child by seeking the necessary support at his/her home, nursery, kindergarten, school and his/her profession is always necessary. Medical diagnosis should always be associated with their parents’ understanding of their children’s characteristics disposition or behavioral tendency as necessary information. We do try that all the time. I would like everyone to consider in any way what they can do for the child.

Moderator Fukatsu: Thank you. We still have a lot of questions and comments, I’m sure, but unfortunately we have run out of time so with this we’ll close the panel discussion.


Closing Address
Fumio Eto

Director, Training Center

National Rehabilitation Center for Persons with Disabilities
Good afternoon. I am Eto in charge of the training center at the National Rehabilitation Center for Persons with Disabilities. As a part of activities as a WHO Collaborating Centre, we have held this seminar to increase awareness of developmental disabilities and to increase employment support. We had a large audience. We are very happy.

In the keynote, Dr. Stephen Shore told about his own experience. He also presented to us what’s important for achieving success in employment and also how important it is to continue having passion for one’s interests. It was very impressive and informative. Thank you very much, Dr. Shore.

Also in the panel discussion that followed in the very much limited time available I’m sure a lot of you wanted to ask more questions from the floor. The panel members were very good at keeping to the time. Thank you to the panel members for sticking to the time. Also, we give our thanks to all of the audience. Despite the fact that this is a Sunday afternoon, thank you for your active participation in the discussion. I am sorry that we did not have enough time. Hopefully we can have another opportunity in the future for a meeting of this nature.

Developmental disabilities have to do with the whole process of becoming an adult to continue being trained and educated to acquire necessary skills for being employed. In this process there are difficulties. That is a characteristic or feature of people with such disabilities. There are a number of difficulties involved in learning disabilities and mental disabilities. Especially in the case of mental disabilities, it’s not so apparent from outside. Therefore, quantitatively and qualitatively support is lagging behind.

Today we listened from government representatives for autism and PDD, as well. A new law has been enacted to support those with PDD. We have been involved in rehabilitation of the people with cognitive disorders very actively. Under another new act, physical, mental and intellectual disabilities are now identified, clearly as the same category subjects to be supported for their independent living. By the second half of this year, the name of our facility will be changed to adopt to treat the persons with any three types of disabilities. We are determined to be very active to extend support.

When it comes to rehabilitation, what is important is to provide support service that is matched to the individual needs of those with disabilities, so we need to understand clearly and accurately what their needs are. We also need to hear directly from them. In that regard, the symposium today has been most helpful and informative. With this, we will be able to do a better job in supporting social activities and employment. To that end, we want to continue developing necessary techniques and technologies and also do work in other areas, as well.

Thank you again for coming this afternoon. Thank you.