Regional public charitable organization "Society for Aid to Autistic Children" Angel. Regional public charitable organization "Society for Helping Autistic Children" Angel Society for Helping Autistic Children Angel

“State, problems and prospects for teaching children with autism spectrum disorders” March 24, 2016, Arkhangelsk

The round table participants drew attention to the following problems and barriers that prevent children with autism spectrum disorders from receiving the necessary help to meet their educational needs:

1. Absence required quantity child psychiatrists in the Arkhangelsk region (in Arkhangelsk - 4 psychiatrists, in Onega, Kotlas, Severodvinsk - one psychiatrist each, in other municipalities there are no child psychiatrists. The staffing of child psychiatrists in the Central District Hospital and PMPK is no more than 25% of the needs, which has an unsatisfactory effect on identifying violations autism spectrum children at an early age and providing them with the necessary assistance in obtaining educational services in young years.

2. The lack of necessary information for parents of children with autism spectrum disorders does not allow them, in the early stages of manifestation of autism spectrum disorders in children, to contact a psychiatrist, PMPK and educational institutions. Parents do not have an algorithm for action when a child has autism spectrum disorders.

3. The recommendations of the PMPC are not always implemented by educational organizations fully and properly. Heads of educational organizations do not always have the necessary information on organizational issues special conditions training for a student (pupil) with ASD.

4. There is no system for training and retraining of specialists from educational organizations, etc. subject teachers when providing educational services to children with autism spectrum disorders.

The round table participants discussed the current situation with the implementation of the rights of children with autism spectrum disorders to receive educational services and recommend:

1) To the Ministry of Education and Science of the Arkhangelsk Region:

Develop and implement in OSI a course to improve the qualifications of teachers of all specialties, knowledge of working with children with autism spectrum disorders;

Develop and implement a module “learning in inclusive conditions” in teacher training colleges

2) The Ministry of Health of the Arkhangelsk Region together with the Northern Medical state university:

- formulate a state order for targeted training of child psychiatrists, providing for the possibility of ensuring in each municipality the presence of a full-time child psychiatrist;

- to provide in training and retraining programs for pediatricians the formation of competencies that allow diagnosing autism spectrum disorder at an early age;

3) Municipal education"City of Arkhangelsk"

Create support centers for providing educational services and support for children with autism spectrum disorders on the basis of one of the school and preschool educational organizations.

Regional public charitable organization “Angel Society for Aiding Autistic Children”

Create an Internet resource providing information support

parents of children with autism spectrum disorder;

Develop proposals for an action plan for the implementation of the Concept of education for children with disabilities in the Arkhangelsk region

Next Parent meeting took place at the Angel Society for Autistic Children in the Arkhangelsk region.

It is perhaps difficult to find a more motivated and interested public organization - parents who understand that their activity determines how the system of helping children with autism spectrum disorders (ASD) in Arkhangelsk will develop.

In three years more than in thirty years

This system, unfortunately, is still in its infancy, but even the crumbs that “Angel” managed to achieve in three years of work are a huge step forward.

Seminars and classes for children and parents - both with the participation of invited “luminaries” in the field of autism, and on their own. Conferences and round tables, meetings with ministers and other officials, attempts to convince of the need to start doing something for autism in our area. The long-awaited opening of a diagnostic room, equipping a playroom, distributing posters with information about autism to kindergartens, schools and clinics...

In a word, it was only thanks to the persistence of our mothers that society finally heard about autism and autistic people and is slowly learning to at least adequately perceive them.

And this coming spring, mothers will learn to defend the rights of their children by participating in the seminar “Education and integration into society of children with autism spectrum disorders,” which will take place on March 21 at the Belomorskaya Hotel. The seminar is being prepared by the legal center of the Union of Public Associations of Disabled Persons of the Arkhangelsk Region. Then, on March 24, at the base of the Arkhangelsk correctional school No. 31 there will be a round table on the education of children with autism.

April is traditionally Autism Awareness Month. On April 2, all over the world, as a sign of support for people with autism, large buildings and landmarks in different cities are illuminated blue (blue is a symbol of autism). This year, Arkhangelsk will also join the “Light Up Blue” campaign - the mayor’s office responded to the “Angel’s” request and agreed to organize the illumination of the “high-rise” on Lenin Square for 20 minutes.

But everyone can participate in the action. For example, illuminate the windows of your apartment, house, or institution with a blue lantern or garland. Decorate the room with something blue, wear blue clothes, inflate blue balloons...

Well, on April 7, a regional conference “Social difficulties and specialized assistance for children with autism and their parents” will begin at school No. 31. One of the pioneers of autism correction in Russia, Sergei Morozov, will take part in it. Sergey Alekseevich – Candidate of Biological Sciences, Associate Professor of the Department of Correctional Pedagogy and Special Psychology of the Academy of Advanced Training and Professional Retraining of Education Workers, founder and director of the “Dobro” Society for Helping Autistic Children.

In the meantime, the mothers from “Angel” dream of a special center - similar to the OERC, but for children with ASD, from birth to 18 years old, where they will receive comprehensive assistance, including effective ABA therapy, classes with speech pathologists, speech therapists, and psychologists. We could start by organizing such classes on the basis of correctional orphanage, and parents are preparing a letter about this to the regional Ministry of Education.

And who are the tutors?

Another pressing issue regarding education is tutors. These are specially trained teachers who accompany a child with ASD and, in official terms, contribute to his inclusion. Tutors are “registered” in the new federal law about education, and the school is obliged to provide a tutor to the student if so recommended by the psychological-medical-pedagogical commission.

But what if the school refuses? Doesn’t know where to get these tutors, citing lack of money? These questions were answered at the “Angel” meeting by the head of the legal center of the regional Union of Public Associations of Disabled People, Elena Shinkareva. It turns out that tutors are already being trained by the regional Institute of Open Education, and you can check the lack of money by sending a request on behalf of the Union to the regional ministry.

Coincidentally, literally on the eve of the meeting we learned about the unpleasant situation in Velsk. There, one of the schools seemed to accept an autistic child and even found a teacher-tutor for him. But he couldn’t cope with the task, and classroom teacher somehow she quickly gave up, complaining about a “decline in knowledge” and did not make contact with the student’s mother. The family is made clear that individualized learning involves homeschooling. Allegedly, the school does not have facilities for this, and they are also in no hurry to find a new tutor. But what about inclusion, which is vital for autistic people?

In the event of any conflict, parents should never lose contact with the school, recommends Elena Shinkareva. – It doesn’t work – come to a public organization of disabled people, talk about the situation, look for ways to protect yourself. On January 1, 2016, Russia introduced an article in the law on social protection disabled people – on the prohibition of discrimination on the basis of disability. One form of discrimination is the refusal to create special conditions for a child’s education, which entails liability for the manager, including criminal liability. If a school has accepted a child with special needs into its team, it is responsible for him, just like for any other child. And if for some child you need special conditions create then educational organization obliged to do this. Now, at least in Arkhangelsk, there are enough specialists with whom you can consult if the manager does not know something and the situation is new for him. Contact the Institute of Open Education, the Ministry of Education and Science, get advice and help in drawing up an adapted educational program, creating special conditions, special educational environment. But the school has no right to do nothing.

– But what if the conflict is with the teacher?

It is very important, as psychologists say, that the teacher accepts the child,” continues Elena Yuryevna. “Therefore, if the situation can be resolved at the school level, we must first try and do it - transfer the child to another class. If this does not work, contact the municipal education authority and ask for assistance in transferring to another school. Well, then, if you haven’t heard from the municipality, write to the regional Ministry of Education and Science. Assistance in filling out an application, as well as other legal assistance, can be provided by our Union of Public Associations of Disabled Persons.

At the beginning of June, a very respectable international Conference"Autism. Choosing a route." And very important: for the first time in Russia, the problems of people with autism spectrum disorders (ASD) were discussed by everyone - ministers and deputy ministers, representatives of charitable organizations, parents of children with ASD, teachers, psychologists and psychiatrists. Arkhangelsk was represented at this forum by specialists from the support experimental rehabilitation center, correctional school No. 31, as well as the chairman of the Angel society for helping autistic children, Lyubov Khrin.

The conference was attended by representatives of more than 70 parent organizations from different regions. The main conclusion we made: the Russian authorities not only recognized the existence of autistic people in the country, but also for the first time expressed their readiness to help people with this diagnosis,” says Lyubov Viktorovna. – International and Russian experience helping people with ASD was discussed at a very high level. The organizers were the Ministry of Education and Science of the Russian Federation, the Moscow City Psychological and Pedagogical University and Avdotya Smirnova’s charity foundation for helping to solve autism problems in Russia “Exit”. Representatives of Yale University (USA) and the international foundation for helping people with autism “Autism Speaks” actively participated.

The conference took place for three days, the program included four main blocks: diagnosis of autism, early help, education, life in society. In fact, the best route of help for people with ASD was determined in these four areas. The first day was devoted to diagnosis and early assistance. The whole world has already understood: the sooner the risk of ASD is identified in a child and the sooner psychological and pedagogical correction begins, the greater the likelihood that in the future he will be able to lead a full life in society. Otherwise, ASD inevitably leads to disability. And diagnosis here is the most important point, without which further movement is impossible.

What is the situation with diagnostics in our area? – I’ll give you a fresh example. In May-June, their parents took three children from Arkhangelsk (two five years old, one not even three) to St. Petersburg and Moscow, and in the capitals all three were officially diagnosed with “early childhood autism.” And here, in Arkhangelsk, they were diagnosed with mental retardation. What does this mean? We won't go anywhere until we have an accurate diagnosis. Because children with ASD need to be counted, you need to know who to help. Now there are 65 children with autism on our organization’s list; practically no diagnoses have been given to them in Arkhangelsk. It’s good that the mothers found an opportunity, including financial, to go to Moscow. And many, on the contrary, will also be glad if they are told in a psychoneurological dispensary: ​​go with God, you have nothing, you read too much on the Internet...

Every mother, deep down in her heart, wants to hear such words from specialists, but this lulls her vigilance for several years. And in these few years you can move mountains, help a child, go somewhere so that the mother can be trained, therapy can be prescribed... It cannot be said that after three years nothing can be done. But it’s definitely impossible to do what was possible before three years.

We are told that parents are begging for a diagnosis because “autism” sounds more prestigious than “mental retardation.”

I assure you, this is not the case at all, and the diagnosis of “autism” scares parents no less! But the specifics of correction for these diagnoses are completely different. Therefore, it is important to accurately determine. When we first turned to the regional Ministry of Education for help, we were asked: how many such children are there in the city, in the region? But if an official diagnosis is not made...

If we talk about early assistance to children with autism, it should be provided by trained specialists. Are they available in Russia? What was said at the conference on this topic? – From January 1, 2015, they plan to open a federal resource center in Moscow. There will be retraining and advanced training for teachers on working with children with ASD.

For the first time at the Moscow City Psychological and Pedagogical University, the specialty “behavior analyst” is being introduced; the course will now be recruited. In some regions, centers for helping autistic children have been operating for many years - for example, in Perm, Pskov, Moscow... The speaker was Sergei Alekseevich Morozov, head of the Moscow center for helping autistic children “Dobro”. This is one of the first organizations in Russia involved in the rehabilitation of children and young people with ASD and other developmental disorders.

The speaker was Lyubov Arkus, who founded the “Anton Is Near” center in St. Petersburg. It was created for adult autists, because at least someone takes care of children, but no one takes care of adults. They pulled us out of our four walls and opened creative workshops.

But these are local, individual cases. Unified system There is no help for people with ASD in the country. Here Americans work according to the ABA system - behavioral therapy to instill various skills. But there is Government program. We are 45 years behind America in terms of autism correction. – Is it possible to introduce the experience of at least one of the regions in our area?

At the conference, a unique comprehensive program was presented, adopted and operating on a regional scale - the Voronezh region. Its title echoes the title of the conference: “Autism. Help routes." Initially, this was the initiative of the governor of the Voronezh region, Alexei Gordeev. If only every region had such a governor! Having heard an interview with Avdotya Smirnova, where she talked about the “Exit” foundation for autism, he called her and invited her to Voronezh. She came and helped write an action plan.

The Voronezh program works in four directions: with the state, families, specialists, and society. Interdepartmental interaction has been established (this was the most difficult, by the way) - regional departments of health, education, and social development. A resource center has been opened and they appear on television and radio twice a month.

They are studying parental requests, launched a questionnaire among local pediatricians, who can diagnose a child as early as one year old - notice the first signs and identify him as a risk group for autism. It’s good if they made a mistake, but if not, they will lead you along this line.

In Voronezh, 229 children with ASD are registered in the region. At a round table with the participation of the vice-governor of the Voronezh region, I asked what to do if we want to implement a similar program here.

They said - please go to the website of the government of the Voronezh region, there are phone numbers, call, come, we will show and tell you everything. It would be nice to send a delegation from our three regional ministries there so that they can be shown everything in practice. And then introduce a similar program in the Arkhangelsk region.

Now our main task is to convey to the regional leadership the need to implement such a program. We sent the presentation to the regional government and the Commissioner for Children's Rights. We will wait for an answer. After all, a public organization is an engine, a locomotive that pushes cars. But the state can and should provide real help. By the way, the ombudsman for children’s rights from Chelyabinsk, herself the mother of a special child, spoke at the conference. She said that from January 1, 2015, the law comes into force that a public organization can receive a state order for social service, and then any specialist will be able to work on its basis with payment from the budget. This is very important for us, we are equipping a games room using the grant we won, but there is no one to work there. And this law will be very useful if we receive an order for such a social service. It seems that horizons are opening up, something is changing for the better, but oh-so-slowly.

Interviewed by Lyudmila ASUTCHENKO.

Photo from the archive of Lyubov Khrin.

P.S. Are you faced with the problem of autism, do you need help and good advice? Want to help yourself? Regional phone number public organization“Angel Society for Helping Autistic Children” +7 952 251 69 96.

Supervisor:
- is a manager in 5 organizations (operating - 4, inactive - 1).
- is a founder in 2 organizations.
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Company with full name"REGIONAL PUBLIC CHARITABLE ORGANIZATION "SOCIETY FOR HELPING AUTIC CHILDREN "ANGEL"" was registered on 04/03/2013 in the Arkhangelsk region according to legal address: 163051, Arkhangelsk region, Arkhangelsk city, Voskresenskaya street, building 116.

Registrar "" assigned the company INN 2901991223 OGRN 1132900000408. Registration number in the Pension Fund: 039002037104. Registration number in the Social Insurance Fund: 290008469629001.

Main activity according to OKVED: 94.99. Additional views activities according to OKVED: 88.10; 88.91; 88.99.

How the Society for Helping Autistic Children in Arkhangelsk works and what it strives for.

Looking for a way out

Our main achievement in a year and a half of work is that we were able to unite parents,” says Lyubov Khrin, chairman of the Angel Society for Autistic Children. – This was the most difficult thing. They called, talked, convinced. Unfortunately, not everyone perceived this positively, some said, don’t interfere in my life...

Perhaps all parents of children with autism spectrum disorders (ASD) have gone through this stage – “don’t interfere, leave us alone.” When you want to isolate yourself from the whole world, hide both yourself and your child from everyone - not like others, strange, wrong. When those who are in the duty of their profession could help, but do not know how, and therefore do not even offer help. But then, sooner or later, the realization comes: isolation is not a solution, but a dead end.

So “Angel” did not just unite moms (dads, join more actively!) - they meet, exchange experiences, communicate in social network, arguing and sharing information, discussing everything related to helping their autistic children.

“We feel better,” confirm the parents. – This is such powerful support! After all, only by uniting can we achieve anything.”

Well, for those who really strive for something, as usual, even the stars help. At first, mothers met only in cafes and on VKontakte.

Having learned about "Angel", the Arkhangelsk food company offered premises in the building shopping center, which can be used for meetings and activities with children. Free space is an invaluable help for a public organization! But the room is just walls...

And then there was a grant from the regional ministry of development local government. “Angel” was helped to write his application by charitable foundation « Good world» – for equipment of a playroom for activities with autistic children. Last summer we received the money, and for the entire 83,540 rubles we purchased shelving, children’s tables and chairs, and, of course, games and toys – Montessori, developmental, and didactic sets. Now there is a mini-trampoline, a cocoon chair in which you can hide and take a break from the annoying world around you, and amazing “smart sand” for relaxation...

Part time for everyone

And the “angelic” mothers were already looking ahead: the grant money was enough to provide, so to speak, only the material base. And who will take care of the children?

The specificity of “out” kids is that you can’t just let them out into a room with toys - “here, play here while the adults talk to each other behind the wall.” And since we’re going to use developmental equipment, do it to the fullest, with maximum benefit, and every day!

And the parents turned to the experimental musculoskeletal rehabilitation center: help with specialists.

Director Olga Bogdanova and her deputy Svetlana Zinovyeva met halfway and “attached” two wonderful psychologists to “Angel” - Ksenia Alekseeva and Tatyana Popova.

It’s difficult to work with such children,” admits Ksenia Viktorovna. - But it’s very interesting! We are trying to apply elements of applied behavior analysis.

Moms are undoubtedly happy, but...

We were given part-time specialists,” says Lyubov Khrin. – This means that in order to get some results, they can only work with four (!) children, twice a week. And we have 74 children on our list for Arkhangelsk! I know that there are autistic children in Novodvinsk, Severodvinsk, and in the region. True, at the Leda psychological and pedagogical center, another 7-8 people study with a defectologist. But that's all! And for schoolchildren there are no special classes at all!

Therefore, the Society was pleased to support the idea of ​​Olga Volkova, the mother of a teenager, who “made a cry” on social networks: let our older children know how to follow instructions, go to school, know how to read and write, go to the store, and some can even move around the city on their own , navigate in time, but they are completely unadapted to life.

They don’t know how to have a conversation, make friends, communicate, they don’t understand and don’t know how to follow the rules of the game. But in fact, they really want interaction, contacts. So let's get them together, at least a few people, and try to teach them the simplest group games - with a ball, blind man's buff, trickle. Other opportunities for learning the game - as a life simulator! – for them it’s simply not.

And the “social play” meeting took place last Sunday - on game room"Angela". “Not bad for the first time,” summed up the mothers (again – mothers, again – themselves!). Everyone had fun and interesting.

The topic is too complex

The biggest problem is that in our region we do not have trained specialists to work with autistic children,” says Lyubov Khrin, upset. – We are very far behind other cities in this regard. Of course, Moscow is ahead, but we also want to keep up with the times. In the meantime, it turns out that our children are taught the old fashioned way, but it doesn’t work with them. Need special modern methods, which have already proven their effectiveness - the same applied behavior analysis, for example.

Another difficulty is that children with autism spectrum disorders are all completely different. We can say that everyone has their own “niche” in autism, so what suits one person will not suit another, and will be harmful to a third. Exit - individual program for each. At a meeting with representatives of SSMU, mothers from “Angel” asked if anyone from the scientific community was working on this topic - it turned out that they were not. Too difficult even to diagnose...

On November 6, the regional Ministry of Health held a working meeting on early diagnosis of ASD and provision of medical care to them. Well, just a “sore point” for the “Angel” participants: many parents note that they had to go to Moscow and St. Petersburg for an official diagnosis and adequate treatment.

Therefore, the official statistics announced at the meeting take into account only 70 autistic children in the entire region! Whereas in the documents of the federal Ministry of Health, which were carefully studied in “Angel”, the figure appears - one percent of all children, that is, in the region there should be at least two thousand. And this is only about children with ASD.

Well, they will finish school (not thanks to someone’s help, but rather in spite of its absence!) - regular or correctional, and then what? Now in one family a 20-year-old guy sits at home, in another - a 22-year-old guy is doing nothing and doesn’t go anywhere. And all care for them falls on the shoulders of their parents while they are alive...

Our dream is to go to Pskov,” Lyubov Viktorovna shares her plans. – There is a wonderful center built for people with ASD, the Germans helped organize it 20 years ago. There are very difficult children, but everything is working: first, development according to the early intervention program, then kindergarten, school there, and then they continue to work there in integration workshops. We have something to strive for - we just need the ministries of education, health and social development, with the indispensable participation of a public organization. Then there will be a result.

Autism is an opportunity, not a death sentence!

The Angel Society for Autistic Children invites relatives of children with autism living in the Arkhangelsk region to cooperate.

As world experience shows, all positive changes in the lives of children and adults with autism occurred thanks to parents, sisters and brothers, grandparents. As a result, more than 60 percent of children with autism in the world become highly functional, they can communicate, work, and start families.

Autism was once considered an “incurable disease” that prevented one from living fully in society, but this opinion no longer holds water in the face of knowledge and information, the volume of which is increasing right now, while you are reading this. We appeal to the relatives of children with autism: among you there are many specialists who have acquired new profession, when an autistic baby appeared in the family.

There are many community leaders and volunteers among you who want to help create a future for your children. Let's work together to ensure that autism is perceived by society as a different opportunity, a different path, and not as a disability. Let's be advocates for children and adults with autism. Let's be their friends. And let's see how far in their capabilities and abilities they can go with our support, help and love.

We invite you to working together, thanks to which every person with autism can find their way and their place in life and be happy. Write and call us! tel. 8-952-251-69-96, e-mail: [email protected]

Lyudmila Asyutchenko

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