Autism – two families, different generations

Autism is an emotive subject and there is no doubt that it is an emotional and mental strain on families who have a child or an adult with autism in the family.  Many people, needing someone or something to blame, latch on to MMR vaccines as the cause of autism.  To date there is no evidence to link MMR vaccinations and autism.

So what is autism?  Autism is a spectrum disorder and that means that it’s a group of signs and symptoms some of which fit together and some that don’t.  Autism follows a continuous course and that means that, although it never stops and there is never a cure, parts of it can change.  Some children will improve their social skills when they go to school whilst others may have improved behaviour as they grow older and others may deteriorate.

Autism will always develop before a child’s third birthday and of all the children who have autism only a small percentage will go on to live independently and support themselves as adults.  About one third of all adults with autism will gain partial independence. For example M’s child L is high functioning, J is in mainstream school and struggling and Z is severely affected.  J’s sister went to “special” schools and later left home in order to receive specialist care.  So it varies greatly from person to person.

Other medical and neurological conditions such as Fragile X syndrome (which causes mental defects and, in men, unusual physical characteristics) and tuberous sclerosis (where fibrous deposits cause hardening of the tissues) accompany autism.  It can cause Gene 16 duplication which affects learning which has happened to two of M’s children.  As many as a quarter of people with autism develop seizures and both microcephaly (a small brain) and macrocephaly (a large brain) are also seen in certain people.

People with autism have problems with social interactions and relationships so how does this, and the societal attitudes, affect the families of those with autism? J’s mum says P, on occasion, made inappropriate comments about people in the street and people would react without realizing she had problems.

J grew up in the 60s and 70s with his sister and never questioned the way she was. He can’t remember an instance when there were comments about her at school whereas M says people are quick to judge when her children go into meltdown and she wishes for a better understanding of autism.  J’s children accept Aunty P for who she is.

P’s mum and dad weren’t aware she was different until it was pointed out to them.  She was their first child in an age where awareness and subsequent support just didn’t exist.  They found it difficult when she went to live away from home as they had to register her as disabled and this was very hard psychologically.  Fortunately they had no negative reaction from their extended families about this decision.

When M’s first child was diagnosed with autism there was a mass exodus of friends and family and M has remained an outsider without their support ever since.  M reacted badly at the news of her child’s diagnosis and was deeply depressed for two years and had to take anti depressants.

The wish for greater understanding of autism is what it all boils down to in the end; a desire to be understood and not judged.  No one would look down on a family who produced a genius.  We misplace values as a society and devalue those in whom we see no purpose.  That is not our right and it is not right.