Family challenges

     by Inovar Autismo

The diagnosis of autism can be a time of mixed feelings and uncertainty for parents. One of the first challenges is the acceptance of the diagnosis and the search for information.

For all the wear and tear of caring, often with greater burden for mothers, mental health problems arise or intensify (anxiety, depression …). When seeking help and support, many parents are faced with insufficient income to cover all the associated costs (therapies, travel, medication …). Some parents even end up losing their job or having a salary reduction, because it is quite difficult to find a balance between personal and professional life, where there is also the difficulty in maintaining friendships or even a support network with whom they can leave the child / young person. As they isolate themselves more and more, social and leisure activities are discarded and the feeling of difference and frustration is accentuated day after day.

 Access to specialized answers and support turns out to be a huge challenge, both in the search for early intervention and in the search for school inclusion. The school path is often marked by situations of discrimination and lack of curricular adaptation, which leads to a very unsatisfactory school performance.

And lastly, one of the challenges that many parents face is the fear of their own death. In cases of a greater need for support, this thinking is present systematically. Because there is uncertainty about the future of their children as well as few answers when autistic young people become adults, many parents end up resorting to institutionalization. However, thanks to the Independent Living Support Model, it is expected that this fear of parents will gradually dissipate and that the possibility of rest, another of the challenges, will be a viable possibility.

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