Today is World Autism Awareness Day. I consider it very important that awareness is raised about autism, both as an advocate for children with autism who are often more likely to end up in an institution, and as someone who is on the spectrum herself.
Autism is not a single, clearly outlined condition. There is an ‘autistic spectrum’ that includes a large range of elements including intelligence, the ability to communicate and relate to the outside world, the tendency to panic and self-harm, and the ability of the person to take care of himself. Some people who know a little bit about autism think that because a child makes eye-contact, is able to talk, or allows others to touch him, he cannot possibly be autistic. However, this is not necessarily true. The autistic spectrum ranges from children who have a profound intellectual disability, are unable to care for themselves in any way, are unable to speak or look someone in the eye and often have a panicked tantrum, all the way to people who are high-functioning, whom most people would not think of as autistic, but who still have a hard time understanding social rules and who need to consciously learn how to behave appropriately and manage their reactions to things. I, myself, am on the latter end of the spectrum.
Autism is often only suspected if ‘strange behaviour’ is seen, such as unwillingness to communicate or even just look people in the face, an unwillingness to be held or touched, stereotypical behaviour, extreme temper-tantrums beyond toddler-age, an inability to deal with changes, or a tendency to self-harm. In other words, autism is often only recognised in children on the more extreme end of the spectrum. And it is more often recognised in boys than in girls, even though there are quite a large number of girls on the autistic spectrum too.
The more extreme behaviour can be very challenging, leading to parents not always being able to cope. A situation further complicated in societies where there is less information and understanding about autism, where the child’s strange behaviour may be seen as innate ‘badness’, as possession by evil spirits, or as being cursed. This can lead to the child becoming outcast from the community, making it next to impossible for the parents to keep him with them. And so children on the spectrum end up being abandoned and sometimes institutionalised.
The behaviour of a child on the autism spectrum can be extremely challenging. For parents to be able to cope with it, support systems need to be in place in the community. Things like guidance and training for the parents and specialised day-care facilities and inclusive education are important to make it possible for parents to continue to care for their own children.
And awareness needs to be spread about what autism is and what it is not. To help the wider community to be less judgemental of the behaviour of the child and the parents, and to be able to offer more support and acceptance. So, the work continues!
Please share this blog, to help raise awareness.