Planning Day 1: Bath

So, the first stop we will do had to be Bath. Not for anything in particular, but for being in the right place to split our journey through England and Wales, to Porstmouth, which will be our 3rd day, so we can get on a ferry that will take us to Cherbourg, our first day in France but fourth into the ride. Very convoluted, I know.

Having stated this, I was well happy for Bath to be the first stop, as we could perhaps get a sofa where to spend the night and a warm shower since, by the looks of it, we’re going to be bathing in rivers and lakes a few times next month. I have been to Bath a few times, but not for 13 years, which makes me feel really old, as I drove to Bath last time, which means I was no child then and I am certainly no child now. We can spend the rest of the day, if we get there as planned, and maybe sort some kind of accommodation and have some time to re-explore the city.

And that is a big IF. The first ride ain’t gonna be an easy one to start with. We’ll have to come out of Wales, which isn’t famous precisely for being flat, through Chepstow and the old Severn Bridge, where a massive climb will be waiting for us as we cycle passed Bristol. At least after this it will be downhill and flat until we get to Bath. I only hope it’s not windy or rainy, or neither.

I have never been so conscious about the weather, I am afraid that, before we embrace the French summer, north to south as we become tougher to endure the Spanish one, we will be getting wet and somewhat cold. Wait and see.

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The importance of predictability

For two years now, I have been working with people that are in the Autisctic Spectrum. Some are very high functioning and can do a lot by themselves and others need a little bit of support. With autism, there are normally a few extra conditions that can compromise independence and overall wellbeing. A lot of the people I have met and work with all this time, suffer from a wide range of anxieties that go from anticipatory to sensory related.

It caught my attention that most of the service users I began working with would have two bath/showers a day. When I asked Therapysts the reason for this, they pointed out that by doing so, we can establish the beginning and the end of our day, which seems very reasonable and helps our service users going through the milestones in their days.

Many times, boredom, not knowing what’s happening next or just the lack of activity can cause a great deal of stress in our guys, so in order to address that need, there is a lot of work put in place for an autistic person, their careers or support workers to know what’s happening, how to deal with a situation and how to manage moods and behaviours.

Apart from set routines for morning and night, there are also lots of ways to add predictability to someone’s life:

  • Weekly planners. We use these to have a full range of planned activities that will offer meaning and education at the same time. They normally very consistent from week to week with variations that can offer a person with independent choice, i.e. visits to places of interest of a choice of a preferred activity through the week. In the company I work for we use a method called “active support” in which all activities are focused onto teaching new skills, maintaining already acquired ones and promote their independence in all aspects of life. Depending of the processing capabilities or each individual, the whole week planner can be displayed somewhere visible for visual reference or can be broken down into days or even small “now, next and then” schedules.
  • Schedules. If an individual cannot cope with a great deal of information in advance, we can make step by step schedules in which we focus on what we are doing now and what will happen next. There can also be “then and after” if our service user can deal with a little more information and even do morning and evening ones, which will almost always end in some kind of rewarding activity (lunch, dinner, snacks, baking, favourited activity…) As we all know some everyday tasks can be very boring and unappealing, so it helps massively to know something enjoyable is going to happen.
  • Routines. We’ve talked about morning and night routines as a way to start and finish our day, but there are many ways to also add predictability through different routines. Some preferred activities will always fall on the same days. Swimming will always be on a Saturday while horse riding happens every Tuesday and family visits on Tuesdays, Thursdays and Sundays. Now imagine you’re a non verbal person, with the ability to understand some spoken language (or a lot) but cannot express your needs in words. If you had no concept of days and date, knowing that certain activity takes place the same days you will be seeing your mum would definitely help you cope with the wait between visits. Or if you can speak and tell which day of the week it is, it would give you a lot of stuff to look forward too, like trips on the weekends or a visit to the pub for a meal on certain days.
  • Consistency. This should really be part of the routines, but I’d like to pay special attention to the way things an autistic person would expect to go. When I first began I met one of the most fascinating persons I have ever met. He is non verbal, so communication was a bit tricky. One of the issues we found with him was he wasn’t taking baths as often as it would be reasonable, having a bit of a negative impact on his life. We spent weeks trying all sorts of tricks but unfortunately, none of them would work, and although he would take a bath now and then, we relied too much on his mum to get him bathed. One day, someone had an idea: “let’s play that song his mum sings for him when he jumps in the bath” and there it was, it worked and from that moment on, he would get in the bath as soon as he heard the song, and it wouldn’t matter who was playing it because we all managed it consistently. That is a very graphic example but consistency is needed all the time in all different kind of circumstances.

To help us carers or support workers understand our individual’s need there are this wonderfully useful tool called PBS (Positive Behaviour Support), which is a document written on the person’s behalf, by the therapysts, doctors, key workers and sometimes relatives in which all aspects of a person’s personality are reflected

In a PBS plan, we can find likes and dislikes, abilities and struggles etc.  From them, we can learn how to identify early warning signs for a potential challenging behaviour and the techniques we should use to try and redirect the situations. We then know where we stand, what we can do and say to help and how to manage a potential situation when and if it happens.

If we think about it, we all like predictability in our lives, and pop music is a great example of it. We like to know what to expect from every situation and the not knowing can be stressful, even more so if you have a autistic spectrum condition.


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Shopping with Autism

For most of us, Neuro-typicals, shopping is like driving or riding a bike. We are very sloppy at first and we get better as life goes on. Some will look out for offers and discounts, others will seek out quality, and other will simply stick to what they usually consume as exploring can be too much of a hassle.

However, for a person with Autistic Spectrum Condition, shopping can be a very challenging, overwhelming situation. In my job, I have been lucky to support a few people through a wide range of shops, from little corner ones to massive superstores. Some will only focus on what they love, why wouldn’t they? All the things they love are being displayed in abundance, so it is really hard to walk passed them and focus on more boring stuff, such shower gel or broccoli.

Others have mastered the art of efficiency, having learned the location of what they normally eat and use, so supporting them to their shopping becomes a really amusing “let’s beat the clock” competition against our past selves. The problem is when it comes to going in the till. There are lots of tasty treats, and with no concept of property or money, it is very hard to resist the drive to reach out and just grab one. And eat it on the spot while the support worker has looked away for a second. Eyes peeled, everyone!

Sometimes, though, it is just about choosing the right shop, at the right time for a specific person. If that person struggles with sudden noises, loud cheering and likes to have a quiet environment, we will have to attend a superstore, ideally out of the way during school hours. Easy,  right? Then it comes to half terms, summer holidays, etc. so it’s not a 100% guaranteed success method, it can always go the opposite way.

Going to the local shop is no different. Local shops have all the products everyone may need or crave at some point through the day. Sandwiches, chocolate bars, crisps, milkshakes, gummies… They are genuine beacons of tastyness. So for a person with autism, the first visit to the shop can be a bit overwhelming. I am sure you have seen yourself, whatever night of the week, where you have maybe an hour before going to bed, and you’ve gone on Netflix and started browsing for something to watch, and spent the whole hour unable to choose. Now imagine yourself in a small space, full of treats and drinks you fancy and you have to choose just one. Hard, right?

The good thing is, as time goes on, confidence grows and understanding of the whole process sits. I mean, you can’t really enjoy a snack on your favourite bench while you let the sun warm you up if you’re stuck in a shop trying to buy everything.

We take some things for granted, but for some people it’s a tricky, yet fascinating situation that requires a large amount of effort to master.

Shopping is an essential life skill, and being able to achieve such life skill make a definite possitive impact towards their independence, that’s why by donating to the project, you will be helping more individuals to achieve a little more everyday.

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What is autism?

Well, this is a big question, and not many people have got the right answer. Many years ago, people with Autism would be treated badly, feared, misunderstood. With the right research, time and the evolution of ourselves as a society we have come to understand the condition a bit better.

If we want to be technical, we could say that Autism is a neuro-developmental, lifelong condition that affects social interaction, verbal and non-verbal communication and social imagination, in which we call the triad of impairment. There are many other little ways in which senses and abilities are affected depending on each individual, but the spectrum is so broad that we will never find two individuals that are the same, they are all unique and different from each other, as well as neuro-typical people.

Once we’ve given a name and a description to the condition, let’s try and answer the first question again, but this time, we will focus on the individuals who have ASC. To me, as a support worker for adults, I have learn that a person with Autism is someone who feels, sees and lives the world in a complete different, unexpected and unprecedented kind of way. They teach us different perspectives, the importance of achieving, the never giving up, not to hold hard feelings with things go a different way and most importantly, they take that little box in which we all tend to leave and think, and they make it disappear. Once you have no box, you have no limits for your imagination, and if you can imagine it, you can make it. That I have learnt from the lovely people I have been lucky enough to meet over the last couple of years.

In this blog, I will try and offer a view into the everyday of a person with Autism: shopping, working, visiting places, eating out, being independent… Stay tuned!

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We are looking for Sponsors

As well as people with Autistic Spectrum Condition need some support to achieve their best potential, we feel we may also need support to achieve our goal and get to Madrid on time. We have some of the necessary equipment, but it would be awesome if some companies join us and put their names on the project by donating gear we can use for the journey and then leave with the charities to organize auctions or such events that would help raise a little more towards the cause.

We are in need of:

  • Bikes. We have our own bikes, but if any bicycle have a couple of quick models that need testing, or would like to sponsor us by lending two bikes, that would be a game changer
  • Cycling gear. Again, we have our own gear, but considering we will have to travel light, and that we will sleep in the wild a few nights, we could use some of the latest technology for athletes. Is there any company out there who want to provide us with clothing and safety gear? Please join the project
  • Sports Camera. We would love show the world and our donors what we’re doing, and prove we’re not cheating and taking trains or getting lifts, but it would be extremely hard to do by constantly holding a phone with one hand and the bike with the other.
  • Nutritional advice. We are fairly healthy people, and do regular sports, but we have never endured anything so extreme, so we need to learn a lot, and learn from good professionals. Any Sports Nutritionist out there who want to make us a plan to make it alive to Madrid, please get in touch.
  • Accommodation. We will be travelling for 18 days through Britain, France and Spain. We are looking forward to some camping, but we will need a lot of rest and a shower now and then. We would kindly and thankfully accept any kind of help in this matter, from all Hotels, Hostels, Camping Sites and people who’d welcome us on their spare sofas.
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