About 1980 I became friendly with a woman whose son was severely autistic. She was quite upfront that it was her fault because she had spent 3 weeks in hospital while having her second child at what she had been told was "a crucial" point in her older son's development.
It is surprising the potentially lifelong damage that misinformation given to parents of a young child can have. Many years ago I was assessing the communication needs of a group of adults with physical disability, whose long established day centre was losing its funding for their places. I was having unexplained problems getting to see one of the service users at home with his family. He obviously enjoyed social interaction, but I failed to demonstrate any language understanding or any specific words in his prolific vocal output at the day centre.
The time of a case conference in the family home had been put back an hour, but I had not been told so I arrived at the house early before the family had got to their son whisked away to relatives and out of sight. It transpired the family had developed a complex communication system, which involved holding his hands and putting one hand over his mouth when you were speaking to him, then releasing him to respond, then largely ignoring the vocalisations he made, but focusing on what to the uninitiated seemed like random gesture, but was in fact a complex series of idiosyncratic signs.
For example people were identified by pointing in the direction of their homes or workplace when looking from the front of his home, so to understand you needed to imagine he was standing with his back to his own front door and then know the relative directions of some thirty or so other locations, some only differentiated by just a few degrees. A farm he often visited was indicated by gesturing going over a humped back bridge, and different farm animals indicated by accompanying very approximate animal noises with this bridge gesture.
The parents, because of things they had been told by doctors some years before in the 1950s, partly about only accepting speech but also about how they interacted with him, had managed to keep this effective communication secret to just immediate family all through his education and much of his adulthood.
In the short time I had available with him, we just worked on getting the directed turn taking in a form more usable by non family members, ie less hands on, and creating with him and his family a dictionary of signs. Just being able to let go of their embarrassment and guilt was I think a release for his parents, who overnight became the go to experts on their son’s communication.
The parents also made a video dictionary of his signing for new carers. In the time I was aware of him, supporting his transition between services, we did not get a full understanding of his underlying disabilities: how much was his physical disability, how much was a learning disability, was there any autism, had there been any previous intermittent hearing loss when younger, etc? In the short term we felt enabling the new care workers to understand his communication, was more important than any detailed assessment for possible future rehabilitation input, [leaving that up to his new service.]
I can not help but wonder how much more might he have achieved if the parents had not been left feeling they were irrelevant and potentially harmful to his development and education right from when he was very young.
[corrected some typos]
