Where to go, what to do?

Last night Zach went to a Youth Club in a town about 15 miles from home which is for young people with learning disabilities.

He has been there before and has enjoyed playing the drums and listening to music and has even struck up a friendship with one of the other young people there called Charlie who loves music too. He sings and Zach drums.

Last night Zach became very upset whilst there and remained upset for a long time. As the support team did not have a driver I drove. While waiting for Zach to calm down one of the youth workers came over and sat down next to me and said ‘we don’t want Zach to come anymore’. I hope she doesn’t use the same delicate approach when speaking to the young people she works with!

I absolutely understand that Zach being escalated is disconcerting for all around him and it may have been upsetting for the young people at the club but it is just another place which we have been told is not suitable for Zach. The youth worker told me that ‘it is a learning disability’ club, so I said ‘well Zach has learning disabilities’ but I wasn’t going to argue or try to suggest that we should try again. Zach has been excluded, banned, and banished from so many places now that it is like water off a ducks back to me.

Where in our society are the adults with severe autism? I don’t encounter any, (other than in my job as a community nurse in a residential setting). Once people with severe autism and complex needs seem to reach a certain age they suddenly disappear.

There are two things I can think of

1. That peoples autism becomes less severe with age (which isn’t even worth mentioning)
2. That people reach a certain age and then live in a kind of twilight zone where they no longer get taken out in public (surely this doesn’t happen?)

But I honestly don’t know where they all are! Everyone has seen the young child who has autism having a meltdown in the supermarket but where are the adults who still struggle with these day to day things?! If anyone knows the answer to this please message me, I would love to know.

I would also like to know where young people who have autism and complex needs are supposed to go to meet their peer group.

Hertfordshire offers a service called Youth Connexions, their role is to offer youth groups (like the latest place to ban Zach) support, information, to help find work placements and suitable educational opportunities up to the age of 24 years.

To say I have been under whelmed by what they have offered us is an understatement! Zach’s Youth Connexions worker could not suggest a single activity, was not able to give me any information or suggestions of work experience and in fact told me he didn’t think he could help in any way! Not very inspiring, he did ask me to let him know of any activities other young people might be interested in!

So what is Hertfordshire ‘The County of Opportunity’ offering in way of….well opportunities for those who don’t fit nicely into the Youth Connexions ideal?

I spend a lot of time searching for activities which Zach will enjoy and will be able to take part in. Some of the ideas I come up with work, while others fall flat but I will keep searching. I want Zach to access the community and still be accessing it when he is 30, 40, 50 and more but one thing is for sure, if he is shut away now with nowhere to go and just John and I for company he certainly won’t be!

Social skills are something which some people who have autism find tricky, new situations and places are something people with autism may try to avoid.  Lack of understanding of expectations and predictability cause massive anxiety and we all try to avoid that!

If there are no safe places for people like Zach to go, to learn social skills and experience different situations and find out that some of them can be good and fun then what? They disappear as adults, their support workers may tell you ‘it makes them anxious to go out, they don’t like unpredictable places and don’t know how to behave in public’…I am sure you see what I am getting at here!

Zach will keep trying new things, doing things which have been tried and tested and getting out and about. If I betted I would put money on further bans but you can’t bake a cake without breaking a few eggs and I want him to keep on baking cakes!

 

 

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