Voluntary work, is it worth it?

When I took my grandson to a centre for people with autism to see if he wanted to go there when he turned 16, i.e., for the next two years of his life, it made me realise how much having one to one teaching by someone who knows you benefits those with AS.

A young man with AS once told me it wasn't a label but a signpost to understanding.
Almost every adult seen through our adult diagnostic service was very relieved to have the diagnosis. A common response was 'at last that makes sense'. Of course these were the people who had been referred. Most people just get on with life and don't come to the attention of services.

I have a BiL similar to that, jura (though not quite as brilliant). I'm not sure if a label would have helped him, either.

I'm so unsure about 'labels'. Do they turn someone who would have been accepted as 'a bit odd', or, 'a bit eccentric' into someone to be regarded completely differently from the rest of humanity?

Or do they help people to understand how to cope with the 'difference'?

It's clear to all now, that he would have been diagnosed as Aspergers - but not clear at all as to whether sticking a label on him would have helped him at all, or improved his life.

Have you ever read the book 'The Curious Incident of the Dog in the nightime' - a great description of what it feels like to be on the ASS.

My older brother, he was 14 when I was born- was always 'different'- he loved classical music when we were all into rock- he didn't like sport, he had great difficulty with personal relationships at school, and was known as 'the poet' and later 'the Professor'. He was massively clever and could do any maths in his head very quickly (à la Rainman) - and loved trains, knew timetables by heart.

Was in the first batch of P.HDs/Doctorate in IT at Grenoble Uni in 1964 or 5 and part of teams that invented some of the earliest computer languages. He has had a great life, albeit in a different way - 80 now and loved by so many.

M0nica we spend a great deal of time discussing how neurotypicals (as they call us) don't always get things right either but the problem with instinctive understanding of others goes much deeper than that for people on the spectrum. The people I work with are intelligent and have had to learn all sorts of things we don't even have to think about. They develop and use strategies. Much of the time they get by but it's a strain.
Of course as Tony Attwood says 'you can cure AS at a stroke - just leave the room!'

AS is more than feeling socially inadequate, though.

I agree with everything Jane10 says, but does seem to work on the supposition that everyone else who does not have AS knows the rules and how they work and are all complicit in some silent conspiracy of knowledge.

Talk to most people and you will find that many of them have struggled in life because they do not understand office politics or are over sensitive to what people say and take offence where none was meant and as for the nightmare that is personal relationships, most of us have memories of nightmare dates or difficult relationships based on complete misunderstandings.

Perhaps if people with AS realised that almost everybody they meet is unsure in many social situations they would feel less exposed.

My study found that women with AS felt that what the wanted now and felt would have helped throughout their lives would be a 'mentor'. A person to explain how playground games work and how to join in. Someone at work to explain office politics, when to take offence and when not to, what's reasonable to expect from others and vice versa. Importantly, what should go on in 'dates' and the minefield of intimate relationships. Probably another word for mentor would be a friend. Hard to prescribe these though.

An interesting bit of research into autism.

theconversation.com/how-to-help-autistic-children-socialise-in-school-93616

all that seems to have been required was that things were explained to him so he could understand
Perfectly reasonable, but this would require one person available at all times to do so, at the expense of the other children. Schools can cope because they have established routines, and experienced teachers able to anticipate problems, because of their intimate day to day knowledge of these children . Volunteers do not have this experience; scouting activities are focused on group activities, and autistic children frequently do not function well in noisy groups. The Scout Association took measures to help this child deal with possible problematic situations, and have been punished as a result, by vindictive parents.
It is very easy to say volunteers should go on this course, that course, before being allowed to organise and run events in their own time, completely unpaid and out of the goodness of their hearts. This case demonstrates clearly why so many voluntary organisations such as scouts, guides, youth clubs, sunday schools etc are closing because of the totally unreasonable expectations of parents, and their almost total lack of gratitude.

oh how i agree with Maddyone ,we all agree autistic children need help and mostly on one to one help ,But to claim all this money £42 thousand ,wow what a sum for hurt feelings ?? i really feel all the helpers in scouts will now stop all future outings in case a parent sue`s what is our country coming to ,this smacks of greed ,because i cannot see where money comes into this ,perhaps someone can enlighten me surely the parents in question would hate their son to have come to harm while away ,so why expect special treatment ,which hard pressed volunteers can hardly be expected to do ,this money should be sent back to the scouting assosiation right away

I agree totally Jane10.
I think people forget that volunteers are giving a lot. Most of those who take children on camp either use some of their annual leave or they have to get grandparents or other family members to stay and look after their own children.
The very least they should expect is some cooperation from parents. If you have a child who may be a danger it is up to you to work with the leaders to manage it- not just say 'you must include my child & I won't help in any way- but I will sue if you don't include and I will sue if he has an accident'!
Too scary to contemplate if you are up a mountain in the rain with a group and a child has a strop and refuses to move or storms off. They are not a 2yr old you can pick up and carry until safe.

Perhaps a final note here. I was very struck by something the devoted Dad of a lad with AS said to me once: 'the world is not going to change for my boy. We need to prepare him for the world as it is not as we want it to be.'
Those parents should have been working with the scout leaders to prepare this boy for life not just expecting them to cope somehow and punishing the scouts for not doing what the parents wanted.

This is a sad story on many levels. I don’t believe that litigation was the right way for the parents to handle this. I would point out that yes the insurers pay the bill not the scout group per se, but these claims will raise the premiums for voluntary groups and many are running on a knife edge of funding as it is!
A lot is expected of many volunteers these days and that is often because voluntary organisations are trying to plug the gaps left by the withdrawal of government funding, this is certainly true of Citizens Advice where advisers are receiving training and delivering work to the level of a legal executive or trainee solicitor! Because of the removal of legal aid from most civil law and decimation of services like probation
Volunteers need to feel and be supported (as in fact do employees) but the added layer for a volunteer is their motivation in giving up time to donate to a voluntary group or charity. It would be a great pity if volunteers felt anxious having read this case of not wanting to take any risks in case of potential claims
I do agree that data breaches are not excusable but I feel that matters could have been dealt with by training and more support for the group.
I admire people greatly who choose to take children on activity weekends such as camping or orienteering, my old girls brigade leader still does this and Duke of Edinburgh awards and she is well into her 80’s! I would not have the patience with dealing with a large group of lively children in a camp environment and so this is one area I won’t be volunteering for. Hats off to everyone who can?

I agree Jane10 - the parents should have worked with the Scout association for the good of all. As a volunteer I would resign rather than put myself in a position where I didn't feel adequate - sad. All it needed was better communication and working together.

Thank you Jane10 for sharing that with us, and thanks to your group for thinking about this.

I discussed this case with one of the groups I run for adults with Aspergers. They were all in agreement that this outcome did no one with AS any good. It risked putting off well meaning people doing their best in their own time. It also risks making children with AS seen as being too difficult and 'special' in need of expert handling.
They felt that the £42,000 would have been far better spent on some more practical training than satisfying the lawyer parents.
They were in awe of people willing to try to run large groups of youngsters.

As a Beaver leader we were very inclusive but the parents with any child with special needs were very supportive. I don't know how you deal with parents like that. You need to be a team.

My 3 DCs (1 son and 2 daughters) all with Down Syndrome went to scouts. They were involved in everything, camping and visiting Norway, Sweden and Germany, total inclusion. On a lighter note poor DD started menstruating whilst at camp totally unexpected as she was only 10 poor girl, everyone coped

JaneJudge - it is a great shame that the Brownies didn't include your daughter and without knowing more, I am quite surprised.
Of course I am not suggesting sharing confidential medical information. My suggestion was, in discussion with parents, sharing an explanation, at different levels, that would be helpful to leaders, other parents and kids. I won't make an example of this case, but I have done the following:
Leaders know that child has been diagnosed with ADHD
Other parents know that child has a condition that makes his behaviour sometimes unpredictable - please help your kids to understand, and talk to us if you think there are issues that need dealing with.
Kids: Child sometimes can't manage things the same as you (older child gives some explanation). Please understand if he does something that seems odd - and let a leader know if there's a problem.
And in 3 cases I have been involved in (as a volunteer) I have known nothing but helpfulness from the other kids. In one case, they enjoyed altering games that could include a wheelchair user.

At a personal level, I would much rather tell people in such a group 'my child has X' than have them wonder what on earth is going on. But of course, you need discussion between leaders and parents as to what feels comfortable.

I did get the impression that the parents did not understand the leaders' concerns, as they did not understand the different environments of Scouts, Beavers and schools. I don't have a clue what some of the leaders were thinking - they do seem to have made some unhelpful comments.

I have read the article but am none the wiser as to how many Scouts there were, what age range, how many Volunteers and their ages and training, surely saying they needed a bit of help from the parents with a child who has been diagnosed with autism and could become distressed being away doesn't seem too much.

I spent 30 years working with children with difficulties most of whom had been excluded from school. We went on lots of trips including camping. We were trained to deal with all eventualities and write risk assessments to cover all possibilities. For unpaid volunteers that is expecting a lot.
When my own son was ten he fell from a rope swing in a campsite and broke his collarbone. The campsite owner was very concerned and probably thought we would make a complaint - we wouldn't dream of it or there would be no rope swings for kids to play on.
I wonder what they did with the payout - seems extreme to me.

When our dfs wanted to go to Cubs and he has learning disability he was only allowed to go each week if I also volunteered to go too. I also ended up cooking Christmas dinner for all Scouts, Cubs and Beavers and leaders. It is just something you do to allow children with disabilities to join in normal fun activities and clubs.

My daughter with disabilities was excluded by the brownies as well despite having a support worker with her at all times. How very Christian!