For parents
Are you the parent of a young person on the autism spectrum? Are they about to become independent or go on to further studies? Do you need tools to support the young person or to maintain your ability to cope?
The pages for parents contain information about services and forms of support and give you tools to help you cope. The information about autism on the pages for young people help you understand your young person better. You can find more things to read in the material bank.
YOUNG PERSON BECOMING INDEPENDENT – TOWARDS A NEW SITUATION TOGETHER
The developmental purpose of youth is to gain independence and to detach yourself from your parents. This phase of life involves new responsibilities and obligations, in addition to accepting yourself and planning your future. The independence of a young person and their transition into adulthood is a major life change for the whole family.
The parents’ role changes as the young person gains more independence. The significance of parenthood and the parents’ expertise are highlighted in the life transition of a young person on the autism spectrum, a change that also demands resources from the young person’s parents. Your concern over how the young person will cope at the threshold of adulthood and their wellbeing may grow considerably. This is why professionals play a crucial role in supporting parents and enabling the young person’s independence. A lack of external support causes the parents to become exhausted and slows down the young person’s independence process.
Families have varying capacities to support the independence of young people and their views of independent life also vary, as do the young people’s capacities to become and be independent. Every young person matures at their own pace, and the readiness for independence is reached individually.
The independence process of a young person on the autism spectrum is often more challenging than that of their peers. Due to this, it is important to start planning the new phase of life and the upcoming change well in advance. Unlike common perception, preparing for independence on time and discussing the topic is more likely to make the change feel concrete and desired.
“Planning the future is not just one conversation, but a process that evolves.”
The new phase of life may be an upheaval for a young person on the autism spectrum, because their ability to anticipate and envision what is to come and form a realistic picture of their future is limited. Independence should be planned on the basis of the young person’s skills, readiness and wishes.
Despite good preparation and planning, life transitions involve elements that put more strain on the young person, making it harder to adapt to new things and situations and to cope with them. At its worst, higher stress levels can have a negative effect on functional capacity and mental wellbeing.
Forming a support network and consistent cooperation with various parties is important to make sure that life transitions go as smoothly as possible. It is important to encourage the young person to talk about their wishes and dreams and to work together to support them on their path to the future.
“Encouragement and positive feedback also give strength to the parents in the period of change.”
Going through things as clearly and illustratively as possible often helps the young person understand cause and effect relationships better. This also helps them discover their own motivation. Learning new skills requires an awareness of personal strengths and an understanding of why learning a particular skill is relevant in your life. It is essential to also pay attention on the skills that are required even in the smallest daily tasks.
Experiences of success and an improved self-esteem make it easier to also learn new skills and other things. A good, working support network helps the young person take on new challenges and maintain a sense of security in the new life situation.
“Let’s work together for the best interests of the young person.”
Independence means letting go and moving on to something new, which may feel even harder than usual for a young person on the autism spectrum. The parents would perhaps like to shield the young person from potential disappointment, whereas the person may be scared of getting less support from their family.
In any case, the young person needs support, help and encouragement from their parents as they become independent. When discussing the opportunities the young person has, it is important that the parents rely on the experience they have gained over the years about their child. A support network is vital for the young person to gain independence from their parents. Every parent should take a moment to consider their changing parenting task and role as the young person grows up.
Independence is every person’s right, and the related changes present the opportunity to experience something new. Nobody can successfully grow up without experiencing some bumps along the way. Supporting independence does not mean smoothing out the path entirely, but rather identifying foreseeable, probable stumbling blocks and obstacles and preparing for them.
- What are you, as a parent, especially concerned about when it comes to the independence of your young person and the related challenges?
- Does the young person have a support network?
- Can you get support and help with your coping or everyday life, if you need it?
HOW TO SUPPORT YOUR YOUNG PERSON
- Do things that work. Remember to also encourage the young person! If an approach has worked before, it is quite possible that you can use it again to find a way to make something else work.
- Be patient. Remember that young people on the autism spectrum are socially and emotionally relatively immature compared to their neurotypical peers. It is often a good idea to subtract a few years from the age of a young person on the autism spectrum and match your demands to this age.
- Anticipate – structure – concretize. Young people on the autism spectrum benefit from structure and need activities that lower their stress levels and enough time and anticipation before changes occur. Good tools for this purpose include lists of tasks, the rules in writing, notes, tables and calendars.
- Simplify schedules and routines, clarify the environment. It is important not to ignore the meaning of stress, especially in adolescence. Sensory factors and sensory overload play a major role in elevated stress levels. This, in turn, increases the risk of challenging behaviour.
- Set reasonable goals for yourself and the young person. Remember kindness and compassion – also towards yourself. Rejoice in small successes. Average is good enough.
- Communicate more clearly. Communication becomes more important in adolescence. It is sometimes easier for young people to accept things in writing. Occasionally it may be easier to communicate using electronic devices, so be creative! Conversations held side-by-side (on a walk, in a car) may also be easier for the young person than speaking face-to-face..
- Stay as calm as possible. Young people on the autism spectrum have difficulties dealing with both their own and other people’s strong emotions. Something it is better to walk away from the situation and give both yourself and the young person time to calm down.
- Choose your battles. Consistency and clarity in everything you do and in communication are more important than ever. Focusing on what is most relevant in the situation at hand is crucial.
- Keep the rules and expectations realistic. Make it clear which ones are absolutely non-negotiable (e.g., ones related to health and safety). The rules should be made concrete by writing them down. Make sure that all the important adults in the young person’s life agree on the rules.
- Whenever possible, let the young person choose. It is worth keeping in mind that making choices puts a strain on a person on the autism spectrum. Ask the young person what they feel would work. Special interests are an important channel of motivation, pleasure, relaxation and retreat for the young person.
- Take some time for yourself, when you can. This is vital for both your and the young person’s wellbeing. Having some ‘me-time’ gives you more inner resources to support the young person as well as you can.
- Do not doubt your ability as a parent. The difficulties experienced by the young person result from them having fewer life management skills. Even if you were the best parent in the world, your young one might still face difficulties.
- Do not waste time on feeling guilty or grieving over the past. Instead, you should focus your resources on supporting the young person right now.
- Do your best.
- Apologize when things go wrong.
- Make sure the young person knows that you love them.
