Defending Quality of Life for Luxembourg’s Autistic
Credit: Fondation Autisme
We were really pleased to welcome lots of new faces to our volunteer social drinks on 13th November. It was great to talk to many of you over a drink in Oscar’s bar, before our special guests from Fondation Autisme (FAL) gave a detailed and thought provoking introduction to their organisation.
For those who could not make the meeting, we want to share a summary of what we learnt from Catherine Fouss and Alexander Jacoby, to help educate and inform about the Foundation, and what it takes to volunteer with autistic people:
The first thing to mention, which has been a concern for many expat volunteers, is that you do not have to speak multiple languages to work with autistic people. We were told if there is a project one of our volunteers is interested in, we should always ask FAL whether an English speaker could be accommodated. So – that’s hopefully one hurdle out of the way!
As for autism – it is more common than you think, although you will rarely catch a glimpse of people with the disability as you go about your normal day. One person in every 150 is born with it, which totals around 3000 people in this small country. The disability will range from acute, often unable to speak or function as we would expect, to the other end of the spectrum, with people living ‘normally’ in the community with aspergers syndrome.
People with autism do not easily understand social information, or language, and often have to be spoken to with the use of photos, objects or pictograms. They don’t always understand the ‘norms’ of social interaction as most people would, they often find it very hard to develop imagination and prefer instead to do repetitive activities. Sometimes highly sensitive to noise, or pain, they can also suffer sensory problems. Routine is very much the key to an autistic person getting through each day – which makes taking them out of their comfort zone to enjoy a day out or a holiday camp, a real challenge for everyone involved. But FAL strive to do this, to help these people make the most of life and to offer respite to their families.
According to FAL, Luxembourg people are not used to seeing disability in the community, and this is just one of the obstacles they face in achieving their philosophy of defending the rights of people with autism – primarily the rights to education and quality of life.
Both of these rights are defended well through FAL’s work with the disabled people who live permanently in their rest homes in Munshausen. These homes came as the result of parents campaigning for their creation in 1996, because living long term with an autistic child is incredibly hard and they could not manage without help. Prior to 1996 people with autism were hidden away and given drugs to calm their symptoms. In FAL’s houses, people are encouraged to live as autonomously as possible, doing normal things like gardening, cooking, laundry and activity workshops. In fact if you take a look at the online shop on FAL’s website, you will see a large selection of crafts that they make together regularly, as part of a team, and sell to raise funds. Christmas cards are the main focus at the moment!
Whilst FAL is funded by the government, they do not receive enough money to offer places in houses for everyone who needs it. Equally, they don’t receive enough money to fully fund their diagnosis service, which opened in 2004 with the recruitment of a multidisciplinary medical team. The earlier the disability is diagnosed, the better the outcome for the individual, but in Luxembourg it will take 12 months to receive that diagnosis from initial GP referral. The professionals working with FAL simply cannot see everyone quickly enough. FAL therefore relies a great deal on donations, and considering the relative richness of Luxembourg, the country is apparently in 46th position of donations per person. So it’s a tough job fundraising here!
Due to the lack of funds, FAL relies heavily on volunteers in all areas of its work.
Particularly for day outings and holiday camps, they need a constant ‘pool’ of energetic, enthusiastic and willing volunteers to help bring quality of life to the people in their homes, and those living in the community. We were told that a week’s holiday camp for 6 people costs on average 5000 euros, and FAL are trying to run twelve of these each year, totalling 60k euros to raise. Other outings which happen regularly each month include; swimming, bowling, cinema, disco, restaurants, park trips, events, markets – mainly in the north of the country but in the summer there are more in the south.
And that’s where Serve the City comes in!…
If the thought of accompanying people on a day trip or holiday camp, offering company, affection and support, and sharing unforgettable moments appeals to you – then you’re halfway there already!
Yes, on occasions it is important that volunteers speak at least French, Luxembourgish or German, to communicate with FAL staff or drivers on the day – but please always ask us if you don’t have these language skills so that FAL can try to accommodate you. You certainly need energy, as some people require physical support, and you need the confidence to handle unexpected behaviours or scenarios. But mainly if you can offer a warm heart, a friendly face, a hand to hold and a good sense of humour, you are onto a winner!
FAL will be offering volunteers a training session in the near future, which may also help to inspire and create confidence so that your experience with autistic people is a positive one. They also provide transportation on their outings, so if you rely on public transport to get to voluntary projects, this will not inhibit you. Also, should you wish, you can choose to accompany a particular person on outings, perhaps someone with less acute disabilities if you find this easier to begin with – anything is possible, all you have to do is ask!
To find out what projects are available, keep across Serve the City’s website and facebook page.
You can also look at FAL’s website where they highlight the types of help they require, both for the people they support and in their administrative offices: http://www.fal.lu/support/volunteer/types-volunteer-work/.
So the message is clear, Serve the City volunteers are very much in demand to work with FAL in whatever capacity you choose, and Catherine and Alexander are really happy to answer any questions or queries you might have before you decide to sign up! Equally they would welcome support with fundraising in any capacity.
Let’s help to show kindness to Luxembourg’s autistic community in any way we can!