"Don’t you know, there are Autism Families?" – and Psychotic Children back in 1962

You might be thinking this post is going to be about how the whole family have symptoms of autism, or the cases when siblings without autism, have facial or other features that are associated with autism; it is not.  If you prefer that subject, follow the link below.

Siblings of autistic children may have distinct facial features

This week I learnt a new term from Monty’s 1:1 school assistant, for when the family unit of a child with autism becomes dysfunctional and everyone is negatively affected.  Those in the autism business call them “Autism Families”.

Monty’s family, she went on tell me, is not an Autism Family (I guess we are a Family with Autism); “you have protected them” and Monty’s brother (his only sibling) is totally normal.

We had been discussing how NT siblings can suffer and become maladapted themselves, due to the situation they live in at home.  The rules at home can change; the rules for bringing friends home can change, the rules for going out change, going on family outings and holidays all change.

Many parents say that their circle of friends completely changed during the years after an autism diagnosis.  That did not happen for us.

Even though I do write this weekly autism blog, our family rarely has any direct contact with other families affected by autism.  We never used a special school, therapy was always home-based, so we have never encountered more than a handful of special families.

But, I have met many teachers and the therapists working in autism as a profession and I am like an open lending library for books on educating someone with autism.  So, I am always getting snippets of gossip about Autism Families and the other category, Families with Autism. 

It looks like there is a big difference between being a Family with Autism and an Autism Family.

Our reader Natasha likes to see autism as a “whole body disorder”; now perhaps it should be thought of sometimes as a “whole family disorder”, and that is not meant in any nasty sense.  Just like Natasa thinks we should be treating all the comorbidities in the child with a diagnosis, do not forget the well being of the siblings without a diagnosis. Some parents are naturals when it comes to dealing with disabilities, but many are not; they might need some help too.

There is nothing special about autism in particular, there are many other types of disability.  Monty’s elder brother has friend from a large family.  The eldest sibling has severe cerebral palsy (CP); he does not talk, walk or feed himself, but the family continued to expand and flourish.  So they would be a family with CP, not a CP family. They deserve a medal. 

CP is not inherited, by the way.

Monty himself has an NT classmate who has a brother with CP.

Fancy joining an Autism Family / Family with Autism?

I did get sent an interesting link recently; it is interesting because the people who wrote the comments generally have many years of experience with autism, so they are worth reading.

The majority of articles you see about autism are either written by adults with mild autism or parents of recently diagnosed children.  Both groups are often quite up-beat and you might wonder what is the big deal about autism.  Will those parents be equally upbeat in ten, or twenty years’ time? Cute little toddlers grow up.

That brings me to the moral dilemma in the link, should the lady date the guy who is a single Dad who has a child with autism at home.

Am I Selfish for Not Wanting to Date a Man with a Special-Needs Child?

If you skip through the comments there are some really heart-felt ones from people who have “been there and done it” and from grown up siblings of a person with autism.

The conclusion overall is not the politically correct response that is fashionable, it was a pretty clear “Don’t do it!”

Autism self-advocates and indeed those Autism researchers, who declare they are not interested in actually treating/preventing autism, might benefit from reading the article and comments.  After decades of living with autism in the family, the picture is very often not rosy.  

To quote the other Rosie, the lady from the discussion I linked to:

“As a single parent to a special needs child I am heartbroken to read these comments.” 

Time for personalized medicine, to make life with Autism better? I think so.      

Autism families back in the 1960s

It was only back in the early 1960s that there were any Autism Families as such; it was only then that a few children began to be diagnosed with autism and continued to live at home, rather than be packed off, as a 3-4-year-old child with "mental retardation", to live an often short life in a Mental Institution/State Hospital.

I recently read an interesting comment written by Michael Baron; back in 1962 he headed the world’s first parent organisation for autism, the UK's National Autistic Society.

His main point was to highlight how autism has completed morphed in 60 years to a quite different condition.  It is not the same autism.

When his organisation was originally founded, it was called The Society for Psychotic Children.  That was the name the parents came up with themselves, before later substituting the word Autistic. 

The old name has well and truly been erased from the records.