If a child has autism: instructions for parents

Autism spectrum disorder is by far the most common group of developmental disorders. According to the latest data, it is diagnosed in every 54th child.¹. When such a diagnosis is made to a son or daughter, parents experience shock, sadness, and confusion. In this state, it can be difficult for them to collect their thoughts and understand what steps to take.

The staff of the Naked Heart Foundation shared useful information and helped us to compile a kind of instruction that will help parents not to waste precious time and avoid possible mistakes.

What to do if your child is diagnosed with ASD?

Information

1. Look for a reliable up-to-date information. Today, many people are looking for it on the Internet, but it is very important to navigate this stream correctly. Most importantly, parents need to understand that there is currently no medical cure for autism. But this does not mean that the child cannot be helped.

There are modern methods with proven effectiveness that allow you to develop communication, speech, master social and academic skills, learn to play and communicate with peers. The behavioral approach is the most effective: it is successfully used in different countries, including Russia, and it gives very good results.

2. Do not trust charlatans. Unfortunately, it is still easy to find centers that promise to “cure” autism. They offer dubious methods like injections and electric shocks that have no scientifically proven effectiveness. “Unique author’s techniques” should also cause skepticism in parents.

Such inadequate assistance programs are, at best, just money spent by you. But sometimes they can be very painful for the child. Besides, it’s a waste of time. To help children with ASD, early intervention is important – we are talking about the age of 2-3 years. It is then that it is necessary to be included in programs that help children adapt and acquire the necessary skills.

Trusting the child to a specialist, check his competence. It is also worth paying attention to whether he can tell in an accessible language what he does in the classroom and why.

3. Correctly submit information, reporting the diagnosis to relatives and friends. Sooner or later, at some point you will have to tell family members, neighbors and friends that your child has ASD. Many parents try to hide this because they are afraid of an inadequate reaction from others. But this reaction is usually due to the fact that people know very little about autism and developmental features. When reporting your child’s diagnosis, give loved ones the opportunity to find out what it is. This will help overcome many communication barriers.

4. Do not hide his diagnosis from the child. This is very important to discuss before your son or daughter enters a school where the diagnosis will affect the curriculum in one way or another. Adults with autism say it was very important for them to find out what was wrong with them and get reliable information about autism. This allows them to think better about themselves, not to see themselves as a loser or ill-mannered person, to understand themselves and their characteristics more clearly, and adapt to difficulties. By telling your child about his diagnosis, you show respect for him.

Rehabilitation

1. Start the assistance program as soon as possible. There are studies that say that behavioral programs that start early and involve the family lead to very good results. In the US, 20-30 years ago, about 70% of children with ASD by the beginning of school age – by the age of 5 – almost did not speak. But with the advent of effective assistance programs, by the age of five, only 25% of children speak poorly or do not speak.².

2. Treat autism-related conditions and illnesses. It is important to remember that it is necessary to treat those conditions that can accompany ASD, such as seizures, gastrointestinal diseases, hyperactivity. In this sense, children with autism, as well as normotypical – that is, developing within the limits of the age norm – children, can get sick. They need, like others, examined and treated.

Of course, there are some peculiarities: children with autism have difficulties with examinations – for example, with an electroencephalogram or a dental examination. You can turn to a behavioral specialist who will develop a special program and make this procedure predictable and understandable for the child, helping to reduce his anxiety.

3. Develop communication. Often parents are afraid that their son or daughter will not speak if he actively uses additional or alternative communication. But when a child does not have speech skills and does not have the opportunity to somehow address others, convey information or refuse something, this leads to undesirable behavior.

Alternative or augmentative (additional) communication is used by people with a lack or significant limitations of oral speech. These methods include gestures, pictures, communication boards, special applications on tablets and smartphones.

It is important that alternative and additional communication should be used not only in the classroom with specialists, but also at home with parents. The child should be able to do this during the day: on a walk, in transport – in any place where he is. If this does not happen, then the effectiveness of this technology is greatly reduced.

Training

1. If possible, send children with autism to inclusive educational organizations. Many parents choose specialized schools. But it is inclusive education that will give children with ASD the opportunity to communicate with their peers without developmental impairment and thus gain the skills to communicate with people. This is something that cannot be learned with theory alone.

Now quite a lot of children with autism study in regular schools. Some of them are engaged in conventional programs, some – in adapted to their capabilities. For example, it is difficult for someone to answer verbally, and then he answers in writing.

Sometimes children with ASD learn some subjects with their peers and others in specialized classes with other children with special needs. For successful inclusive education, multivariance is important, that is, the school must satisfy different educational needs in order to be able to move from one educational environment to another as the child develops. Support is also provided for the development of social skills.

It is very important that children are together at recess, in the cafeteria, during school activities. People with special needs have the same rights as everyone else: to live in a family, to study, to make friends, to communicate. And it is at school that it is important to realize these rights. Yes, a barrier-free environment should be organized for special children, a lift or a ramp should be provided, but it is much more important that those who communicate with them have no barriers in their heads.

2. Don’t focus on your child’s academic skills. Many parents focus on these skills. But for the child and his future success, it is much more important to learn to control his behavior, to develop interaction skills. This is exactly where you need to start. In order for a child with autism to pay more attention to other people, listen to instructions and complete tasks, you need to find something that attracts him.

Behavioral specialists call this motivation, and it is the most important component in the education of any child. For example, students are given grades, they are praised for their success. But for many children with ASD, social praise or abstract rewards are ineffective. Therefore, it is very important that at the beginning of training an assessment of the child’s motivation takes place and a plan is developed for when and for what he gets what he likes.

Socialization

1. Get to know your like-minded people, join parent organizations – this is very important for families where children with autism grow up. Most of the positive changes occur due to the efforts of the parents themselves. And in thematic parent organizations, groups, you can get help and recommendations, learn about specific centers, friendly schools, dental clinics, leisure organizations, sections. And most importantly, there is an opportunity to exchange experience, get understanding and support.

2. Go out into society, do not refuse help. Of course, the level of stress in a family where a person with ASD grows up is higher than in families with normotypical children. And parents can experience depression, anxiety about the state of the child and his future. Often, others treat such children inadequately, which increases the stress for parents. Therefore, it is very important to learn to ask for help from relatives and relatives. They can help even with simple actions – cook dinner, sit with the child for a while, take them somewhere by car.

Adaptation

1. Ensure the safety of the child. Studies show that children with autism are significantly more likely than others to find themselves in dangerous situations. This problem is especially acute for those who have severe learning difficulties. Many do not realize the danger and do not fully read the various social situations. And the troubles that can happen to a child on the water, on the road, in transport, are often associated with running away.

What can be done to ensure the safety of the child?

• Sew tags with a phone number and home address on a child’s clothes, it’s better to use several items at once, use identification bracelets.
• Attach a GPS device to the child that can track the location of the child and transmit information to the parent’s phone if the family’s financial means allow it.
• Hang stop signs on doors and windows. Maybe turn on door alarms at night, as well as security cameras if the situation permits.
• Use a social story to explain to the child what is happening on the street and how he needs to behave in various situations, how and to whom to turn for help, what to do if he is lost. This is a very important behavioral tool.

Social stories are a method of working with social behavior. It helps prepare children with autism and other developmental disabilities for everyday situations that may cause them difficulty. Social stories are also used for everyday activities – the child is explained in advance what a trip to the store, to the hairdresser or to the doctor is.

• Prepare an action plan. The family must understand where to go and what to do if the child runs away or gets lost.

2. Apply for disability. From the moment the diagnosis is received, the parent can go and arrange for the child disability. It is very difficult for many to accept this, such a status causes fear, and not unfounded. In our society, there is still a stigmatization of people with disabilities, although from the point of view of the law, such discrimination is strictly prohibited. And in this sense, interaction with other parents helps to get rid of frustration and fears.

Why this should be done: it provides additional material benefits in the form of pensions, payments and benefits. Given the level of difficulty that families and people with autism face, this extra support will come in handy.

Of course, this is not exhaustive information – but it will help parents navigate and choose directions for further actions and decision-making. Additional and more detailed information can be found at the links in the article, as well as on the website of the Naked Heart Foundation.

¹ https://nakedheart.online/articles/autizm-vstrechaetsya-u-kazhdogo-54-go-rebyonka

² https://www.nichd.nih.gov/health/topics/autism/conditioninfo/treatments/early-intervention