It has become a stereotype to expect someone with autism to wander away and become lost. However, parents apparently have also become lost, sucked up into private online “hangouts” where discussion about treatment is forbidden, replaced instead with despair. According to my sources, complaining about the children is encouraged in those groups. It’s no wonder that a member of one such private group was driven to such hopelessness, that she attempted to murder her autistic child.
When a parent of a child with debilitating autism seeks help from one of the open, “happy-face” groups instead, he or she is attacked for portraying severe autism as the tragic, life-robbing disorder that it is. No wonder parents hide, with receptions like that, which belittle how serious the disorder can become.
A different type of group is needed, one protected from both outside attack and inside betrayal. Such a group would have to nurture, not needle, and it would have to be open to questions the way science is supposed to be open to questions.
Mutual learning, encouragement, and care are the keys to overcoming the stigma and hopelessness that make life worse for families with severely autistic members. For instance, sharing research about autism causes and treatment, sharing stories of little successes, and sharing moral support for families in the same boat we’re in can enormously boost our chances of success. If we know the people well, perhaps we could give physical support in the form of running errands for each other or watching each other’s child on occasion.
Imagine the time that could be salvaged in that scenario, with such a group. Maybe some of that salvaged time could be used to take some of the free courses that are available online, courses that could help us become more knowledgeable experts in the problems that cause our children to become ill. There are coursera.org, edx.org, and many others available for our free use.
Maybe then, instead of missing parents, we would have well informed, well organized, and very visible parents of the severely autistic. Parents wouldn’t be so worn down and passive from shell-shock, but built up and active from the power of learning, and the energy of mutual love.
I hope you decide today, if you are the parent of a child with severe, disabling autism, not to hide but to seek out your true allies and to seek out the power you need to help your child.
Some providers of free education: