As a parent of a child with autism, it can be difficult both to find the right information and get access to support. Maybe you suspect a diagnosis or your child already has been diagnosed. Below is information about autism and what supports are available.
Diagnosis and assessment
Autism is diagnosed if someone has such great difficulties with social interaction and communication that it becomes an obstacle in everyday life. The diagnosis means that it is difficult for the person to cope with their everyday life. Autism is sometimes called an autism spectrum disorder. To get a diagnosis, an assesment is made after, for example, parents or educators have noticed that the child is having difficulty. A first step towards getting an assesment is to contact the health center (Vårdcentral or BVC). The assesment can then be done by the child psychiatry (BUP), Habilitation services or a pediatric clinic. You can search for your closest clinic at 1177.
The Habilitation services support you and your child
If your child has difficulties with the autism spectrum, it is important to do two things. On the one hand, make accomodations so that the child copes better with their everyday life and on the other hand, help the child to develop new skills. There are ways to do this and if your child is diagnosed you are entitled to support from the Habilitation services. The habilitation services can help by coaching you as parents and the preschool or school in strategies for accommodating and practicing skills with the child.
Autism diagnosis also entitles to support under the Act on Support and Service for Certain Disabled Persons (LSS). You cab read more about this (in Swedish) at Autism and the Asperger's Association.
Your child's needs
Effective interventions consist of adapting the environment and practicing important skills that the child needs to master. What the support looks like depends on what makes you and your child lead a better life. The more things the child has difficulty with, the more intensive interventions are needed. It has been shown that interventions work better the earlier they are given and the more time is spent on them. However, the most important thing about the interventions is that they focus on critical skills and that they are carried out with quality. Therefore, it is very important to get proper supervision.
Targeted or multifaceted interventions
Many children receive individual interventions around specific difficulties, e.g. an exercise in communication if the child needs to practice communicating or an effort to reduce problem behaviors if the child harms himself or others. If your child has a lot of difficulties, an intervention around a single difficulty is not enough, and intensive interventions are needed. In intensive interventions both the parents and teachers are supervised teaching skills many different areas. The areas are often, for example communication, interaction, everyday skills and motor skills. These types of interventions are called different things, perhaps your habilitation centre calls them IBT, EIBI, MII or TIBI. All of these abbreviations mean the same thing: early multifaceted behavioral interventions and are based on ABA. If you live in Stockholm you can read mote about the Habilitation Service's behavioral interventions here.
The purpose of intervention
The interventions should always focus on increasing independence and quality of life. The purpose of supports is for your child to feel as good as possible and be able to do as much as possible in their life. Often, the most important thing is to teach the child to communicate and different ways of interacting. An important part of becoming as independent as possible is to be able to express what you think and feel, which is often difficult for children with autism.
Prerequisites för intensiva insatser
It is you as a parent and the preschool who make accomodations and practice with the child with supervision from the habilitation. In order to perform the training, the preschool needs to have a designated resource person who is responsible for your particular child. For this, the preschool often needs to make an application to the municipality to get extra money for it ("tilläggsbelopp"). The habilitation services usually require that preschool and parents in total practice a certain number of hours a week (usually between 15 and 30). It may sound like a lot, but remember that this is time that important adults still spend with the child! For example a child practicing putting on clothes when it is time to go out, asking for something during snack time and practicing playing with other children is counted as time teaching the child. Also remember that it is possible to apply for financial support from the Swedish Social Insurance Agency (Försäkringskassan).
If you can't get support from the Habilitation Services
If for any reason it is difficult to get support from the Habilitation Services, it is possible to hire a consultant to get supervision. We at CBA have the competence to supervise educators and parents based on your needs. If this is relevant to you, then Don't hesitate to e-mail us for more information and pricing! You can also practice on your own, for example with the support of the book Leka, prata äta – Övningar för barn med särskilda behov (In Swedish).
If you want to get in touch with other parents who are involved in early intensive interventions, you can search for groups at Facebook. In Swedish there is the group Facebookgruppen IBT-träning för barn med autism.