ENG_The blue Suitcase

THE BLUE SUITCASE

Cinzia Raffin

Planning holidays and trips with boys and girls with autism

Alessandra Convertini

Cinzia Raffin

Psychologist and psychotherapist, mother of a young adult with autism, in 1998 she founded the Children and Autism Foundation Onlus, an organisation recognised by the Ministry of Health, which over the years has become one of the most pioneering realities in taking care of people with Autism Spectrum Disorders from the cradle to the grave. Currently, in addition to being its President, she is its Scientific Director and is in charge of Research and Development and Training.

Alessandra Convertini

Psychologist, graduated from the University of Padua, she has been working for years as a member of the multidisciplinary team of therapists within the Children and Autism Foundation ONLUS, dealing with rehabilitation programmes for children, young people and adults with autism of all degrees of seriousness. She has contributed to the drafting of operational protocols to facilitate caregivers in providing them with educational help and support in various contexts of life from school, to health, and to emergency.

If you are holding this book in your hands, it is likely that you have, or have had, to deal with Autism Spectrum Disorders (ASD) to some extent.

ASDs, you may have been told, are Neurodevelopmental Disorders: that's right!

But, if something in people with ASD has 'disturbed' the typical evolution of the Central Nervous System (CNS), why do we keep talking about a Disorder? This term is misleading and we will not use it in this book. A brain that has developed in a different way compared to the typical trajectory, due to something unusual that has been there and may still be there, generates a condition, in this case a neurodivergence condition, more or less evident, that often leads to significant difficulties for the affected person and his or her entourage, but from which one does not 'recover'. Since being people with 'autism' does not mean being sick, but being people - first and foremost people - with a different functioning.

Jim Sinclair, a person with autism, more than a quarter of a century ago said: "What is normal for other people is not normal for me and what I consider normal is not normal for the others. In a certain way I am ill-equipped to survive in this world, like an alien who got lost without a handbook to find his way around. But my personality has remained untouched.

My individuality is not damaged. […] Grant me the dignity to find myself again in the ways I want to; accept that we are different from each other, that my way of being is not just a faulty version of yours. Question your beliefs, define your positions. Work with me to build bridges between us' (Sinclair, 1998). Although we can define each human being as a unique individual with peculiar functioning, not everyone experiences the alienation witnessed by Sinclair and the majority feel that they are 'normal'. We have no objection to using the term 'normality' as long as we deprive it of any value judgement and provide it exclusively with a statistical meaning: from the point of view of the developmental patterns of the CNS, there are some which are more frequently found as 'normal' or rather 'neuro-typical', since they are common to the majority of individuals, and others which are less frequently occurring and are therefore described as 'atypical' or 'neuro-divergent'. Leaving aside beliefs associated with visions of illness and search for a cure, we simply observe that neurodivergent persons manifest peculiarities that interact, and more often collide, with social and physical environments created by the neuro-typical majority and therefore made in the 'image and likeness' of neuro-typicality (Raffin, 2022).

Autism as neuro-divergence represents a condition that cannot and does not make sense to be intended as transient, fleeting or medically modifiable and treatable. Similarly, its description based on the concept of "spectrum" (ASD) in use within clinical and diagnostic reference manuals is ambiguous because it outlines a severity criterion parameterised on its distance from "normality": the closer the individual approaches Neuro-typicality, the more his or her autism is mild or "high-functioning", the further he or she gets away from it, the more severe or "lowfunctioning" (see figure 1).

Fig. 1 Based on the CARS scale – Childhood Autism Rating Scale (Schopler et al., 1988).

However, there cannot be a linear continuum running between a 'lot' and a 'little' autism, that is, between a high uniformity to what is most typical and a low adherence to it. This view is misleading because it leads us to believe that the person with mild autism is more easily approachable than the person with severe autism, and that his or her condition is less challenging and less distressing, but this is actually not so! Different and much more explanatory is the representation suggested by Sinclair, who talks about two worlds, each with its own integrity and significance, two worlds that need bridges connecting them, because the well-being of autistic people is not linked to their being more or less 'autistic', but to the quality of the relationship they establish with the neuro-typical world.

The necessary encounter between the two worlds, in this book, will be set in the context of a holiday.

Let's say we set off with a peculiar travelling companion: what do we need to build that necessary bridge so that the holiday is such for every participant, that is, filled with wellbeing, relaxation, and lightheartedness?

Many parents would tell you that such holidays with their autistic children are simply impossible.

We will try to give you concrete ideas and suggestions so that you can try to make them possible.

We will take you inside the mind of a person with autism, so that you can see things from his or her point of view and, starting from this, we will tell you how it is possible to organise a holiday in the best possible way; we will alternate practical suggestions with respect to the typical steps of planning: from choosing the destination to preparing the suitcase, from choosing the means of transport to hotel accommodation, from ordinary to extraordinary management of changes and unexpected events up to the homecoming and the shared processing of the experience.

Examples, stories and many graphic supports will provide you with strategies for effective communication and for dealing with the most difficult situations; lastly, stories and insights will help you to approach events outside the exclusivity of the neuro-typical perspective.

Of course, it will depend on each reader to adapt what we are going to present to his or her own situation. We kept the most complex conditions as a reference, so as not to exclude anyone, and we will allow the reader to choose: 'this is not necessary for us' or 'interesting, but our son is too challenging for this advice to be effective'.

Recalling the metaphor of parallel worlds, this book is not only about the journey, but a journey itself, that takes us out of 'our world', made up of a certain shared way of feeling, perceiving and thinking.

It is up to us whether we are able to reach the 'other' world of neuro-divergence, with a little knowledge, imagination and love, or whether we keep it an unknown and inaccessible exoplanet outside our solar system.

Through the vademecum on how to travel with autistic people, we are actually accompanying you on a lifelong journey that, if we manage to embark on it with no fear, no prejudice, and without that narrow self-referentiality that is a constant source of discouragement for parents and caregivers, could indeed turn out to be an interstellar journey.

Anxiety, a lifelong companion

«Anxiety. A fundamental manifestation of being in the world»

Martin Heidegger

In this chapter we will talk about…

Understanding the Autistic Condition (AC), a prerequisite for a conscious approach to the contents of this book, focusing on the experienced anxiety that characterises the lives of people with autism.

In this chapter you will find...

• A general framework of the Autistic Condition

• The " worldview" of an autistic person compared to that of a neurotypical one

• An insight into the experience of anxiety that characterises people with autism which helps us to understand their behaviour.

The worldview

There are a few things about the Autistic Condition (AC) that you need to know before reading the following chapters, because they explain the meaning of all the suggestions that will be provided.

AC is the outcome of various alterations, both biological and environmental, that have changed the normal developmental pattern of the Central Nervous System (CNS) and consequently altered the behaviour that is usually expected from human beings.

People who have had a typical developmental trajectory and who we therefore call 'neurotypical', despite being different from each other, share a common way of processing thought, reacting emotionally to events, and paying attention to the stimuli that reach them from outside or inside the body.

If you were asked to imagine what might have happened to your sister who was supposed to come back from school at around 1.30 p.m., and instead at 3.00 p.m. she has not yet returned home, you would probably think that something closely related to your sister went wrong or that she chose to do something other than coming home.

The answers might be like:

• her teacher asked her to stay after hours;

• they had an evacuation trial at school that dragged on;

• she missed the bus;

• she decided to go to a friend's house;

• she stayed to talk to a boy she likes;

• she had an accident.

Take a moment and think of some other answers.

We're pretty sure you may have come up with more scenarios, but, assuming you are neurotypical, the way your mind processed them is identical.

The content changes, but the process is the same: you went looking for a cause, related to your sister, that led to that effect, the delay. In other words: you used causal reasoning.

We believe that it could not have crossed anyone's mind that the girl did not come back because at home someone forgot to put the newspaper next to the ashtray or moved an object from its usual place, also because... how could she have seen it if she was at school?

NB!

What helps us to rule out this kind of hypothesis is precisely the mind theory that neurotypical people possess, meaning the ability to put oneself in the mind of another individual and to see (or as in this case, not to be able to see) things from his or her perspective.

Now read the statement of Gunilla Gerland, a woman with autism.

GUNILLA'S PERCEPTION

If everything looked a certain way in the living room, the sun came in through the curtains, the ashtray was on the table next to the newspaper, and if at that moment Cristina, my sister, arrived from school, I thought that everything had to be the exact same way the next day for her to come home again. It was very easy for things to go like that! And they often went like that, in fact. Sometimes people interfered with my theories. Right when I thought I had grasped the connection between things, someone would move the newspaper and I no longer knew what to think. Wouldn't Cristina come home? Wouldn't she be able to come? Forever? Or was I missing the point? If so, was there something else that was wrong? No, it had to be that my sister wouldn't be able to come home until everything was set right as it was before.

This way of thinking is extremely difficult to even imagine, which is why we find it hard to imagine that it could be the motive for what Gunilla does next, that is, putting the newspaper back.

And here is our astonishment, sometimes even our irritation, when faced with very frequent behaviour in people with autism, such as arranging objects, doing everything the same way all the time, getting angry if they find things out of place, per forming rituals that are completely useless to our eyes. But what if it was our sister's coming home and the issue was to see her or never see her again, wouldn't we also put the newspaper in its place, neatly lined up with the ashtray?

Let's think...

In people with autism, the associative thinking model may be prevalent, very different from our usual way of reasoning, even though it is also known by neurotypical people, for example in some forms of superstition, like thinking that something is going badly because a black cat crossed the road or being afraid to go to a place where something unpleasant happened to us in the past out of fear that it will happen again. Neither the black cat nor the place may be the cause of the negative events that occurred, but our brain may have stored them together with these, given their concomitance, generating an association that replaces rational thought.

When we mentioned neurotypical self-referentiality in the introduction, we were addressing this: we, neurotypical human beings, project our way of functioning onto others, and we are fine with this in most cases because, actually, the others, even if they have very different opinions, preferences, and interests, all function more or less in the same way. But this self-referentiality blinds us to neurodivergent behaviour and therefore, with a certain arrogance, we label it as 'rigid', 'compulsive', 'obsessive' and if we wonder what might have generated it, we again use 'typical' ways of thinking that help us neither to understand it nor to accept it.

1 Anxiety thermometer

Some indicators can help us.

Biological

Behavioural

Environmental elements

Neurovegetative reactions such as heartbeat acceleration, sweating, tremors, etc.

The accentuation of behaviours that we have learnt to recognise as indicating agitation, fear, or more generally something wrong: that is, anything that departs from the 'normal' manifestations of that person and that could be defined by the sentence 'that's not her!".

An analysis of the context, if carried out with 'expert' eyes, that is, as Bogdashina claims, from the point of view of that person with autism, is almost always a very reliable predictive indicator. Basically, if we know that the person is bothered by crowds, confusion, noise, unexpected events, etc., and the context presents one or more of these elements, we can be certain that the person is experiencing anxiety.

At this point it is possible to associate the word 'anxiety' with that state, quantifying its intensity with a thermometer that progressively indicates its level in a graphic way until the anxiety disappears completely. Supporting this training with stories of other people experiencing anxiety situations in which the graphic thermometer is also used, will gradually lead the person to a more conscious perception of what anxiety is and also give an idea of how much he or she is experiencing or when it has gone away. If the person is able to recognise and report those moments when he or she feels anxiety at different degrees of intensity, the caregiver will be at a great advantage in intervening appropriately or even preventively.

C hapter t wo

Let's pack

«Every long journey begins with a first step»

Laozi

In this chapter we will talk about…

What does packing mean

• intended as 'physical baggage', with one's personal belongings, to be prepared with rigour and method;

• and in a broader sense as 'emotional baggage', teaching how to manage the anxiety of change through targeted

In this chapter you will find...

• Organisational tips for planning a holiday experience

• Practical examples to facilitate the involvement of the autistic person

• Operational strategies to manage situations

• Useful tools to encourage autonomy.

Yes, travelling…

Leaving for a travel destination is a stumbling block that, at first, seems overwhelming for anyone preparing to break away from their routine and daily life.

For some people, the difficulty lies in packing their luggage, for others in choosing their long-awaited destination while juggling reservations and places to visit; some don't like to leave the comfort of their home, while others know that the change will be so demanding that they will need a holiday to recover from the holiday itself. For some people, the difficulty lies in packing their luggage, for others in choosing their longawaited destination while juggling reservations and places to visit; some don't like to leave the comfort of their home, while others know that the change will be so demanding that they will need a holiday to recover from the holiday itself.

No matter how one decides to approach a holiday, every person knows that this period of time will involve changing the habits that punctuate one's everyday life. One would ask: why do we embark on such situations? The answer would be unanimous: we do it for pleasure, to spend quality time, to get away from the ordinary stress and, in general, to get away from routine. When choosing a holiday, we are all guided by different reasons that have, however, as their common denominator, the desire to enjoy a great experience.

This book, however, is not meant to deliver a point of view that is commonly shared by most, but rather to make one think about situations from a different perspective, the one of a person living with an Autistic Condition (AC), considering his or her peculiarities and difficulties.

Think of a daily routine that is not caging, but reassuring in its constant sequence of habits; think of a reassuring ordinary, not altered by unforeseen changes that are perceived as a

source of anxiety; of a stable time that holds the key to serenity in unchanging details. From this perspective, nothing would seem more senseless than to abandon all this for the sake of a radical change such as a holiday.

So, why try?

The answers are many, but they can be summarised in the idea that the most functional adaptation for an individual also depends on the ability to cope with change, accepting its inevitability and managing to find a new balance, after learning to self-regulate one's emotionality.

So, how to try?

This is where we get to the idea of this book, based on operational experience developed over years of clinical practice, which is intended to be translated into a practical and functional guide, a concrete training that accompanies the reader step by step to discover the most useful strategies for planning a holiday experience that is suitable for each participant.

NB!

Thinking about a holiday does not mean that we should immediately imagine packing our bags to fly overseas. As suggested by the quote at the beginning of the chapter, the start of any great journey must begin with small steps that help to trace a strong and safe path on which to move.

The first experiences of travelling are fundamental in building the image of a new habit that will hopefully represent a positive change in everyone's daily life. Let us therefore not get ahead of ourselves: let us try, instead, to follow a slow and linear pace that will help us arrive much further.

Getting ready

The third and final phase begins once the planning has become more definitive, that is, after the person has been involved in different ways in the decisions to be made, and both an organisation and a travel itinerary have been established to provide the necessary predictability to face the experience with greater safety for all participants.

Getting ready can be considered the most operative step in this sequence.

In a literal sense, during this step we will devote most of our time to packing the physical baggage that is necessary for our holiday and that will change depending on the type of trip we choose.

In a metaphorical sense, however, it will be a concrete way to further consolidate the arrangement of those emotional baggages of anxiety and extreme insecurity that are lifelong travelling companions for people with autism.

Packing a backpack for a trip or arranging the suitcase together for a holiday offers us a number of practical advantages:

– it helps to keep things more under control;

– it provides the tools for greater autonomy in the future;

– it gives us the awareness that change is happening in front of our eyes and that we are carrying out all the useful actions to face it with confidence.

Leafing through the next few pages we will find pictures (which can be replicated if necessary) showing various visual examples that are useful to support and complete the time of packing together.

Recalling the concept of gradual proposals, it will be worth starting from filling the backpack for a jaunt, leading to the organisation of the beauty case and suitcase for trips of more than one day. Nothing prevents anyone from using these practical tools to arrange other types of luggage (from the beach or swimming pool bag, to the gym bag, to the school day backpack).

4 Clothing list

Example of a visual clothing list, useful when packing your luggage for a trip of several days and nights.

©Children and Autism Foundation ONLUS.

UNDERWEAR

Pants

Vest

T-shirt

Socks

Bra

Pyjamas

Toiletry bag

SAFETY PROCEDURES

When planning our trip and explaining to the person all the steps that are needed to carry it out, we must not forget to prepare the person for those safety procedures that, like it or not, are now required for most types of transport.

For several means of transport, we have to anticipate scenarios of potential discomfort due to long waits and the chaotic situation related to arrival and departure proce dures, such as finding oneself channelled into endless lines of passengers

In many cases, it will be necessary to deal with check-in and document handover and other bureaucratic formalities; if these procedures are not automated and can be done online, they will have to be done on site with possible delays. The operational strategies discussed in the previous chap ter will be very helpful to deal with these situations in the best possible way

The types of checks expected are generally similar for means such as aircraft, ferry or ship. We therefore prepare the person for the presence of unusual equipment and practices such as: metal detectors, X-ray tunnels for scanning hand luggage and possible inspections on the person.

We always anticipate the possible need to hand over some or most of our luggage, as required for many boarding and departure procedures (on planes, ships, ferries and coaches). In view of this moment, make sure to prepare your personal belongings so that you always have available what you consider to be of immediate necessity for all participants and generally useful for the first day of the trip, from various papers and documents to specific items or food for each person and handy changes of clothes that can be used in emergency situations; what usually gets stowed is in fact the bulkier luggage, while backpacks or bags are generally allowed to be kept at hand.

As a general rule, we always recommend that you carefully read all the recommendations provided by the various transport companies in order to avoid, as far as possible, unexpected events and delays that can become a source of anxiety and frustration. Being informed and informing others of the presence of a passenger with special needs helps everyone to face the journey with greater serenity.

Ways to facilitate communication

Setting aside for a moment the choice of transport means, we shall consider the importance of always having a channel of communication with the other person, encouraging him or her to use it in a functional way. In the previous chapter we have already mentioned the importance of including in the person's educational development the familiarisation with

9 How do I feel?

Consider the creation of a handy memo board to be carried around or to be taken out when necessary, with the most relevant images collected to summarise the needs (perhaps placed on a Velcro support so that they can be easily detached and repositioned), as in the example shown below.

This may encourage the person to interact communicatively, giving the right suggestions on how to express him or herself.

I'M HUNGRY

I NEED TO GO TO THE TOILET

MY BACK HURTS

MY HEAD HURTS

MY BELLY HURTS

C hapter t en round trip

«A journey, after all, neither begins in the instant we set out, nor ends when we have reached our door step once again. It starts much earlier and is really never over, because the film of memory continues running on inside of us long after we have come to a physical standstill.»

Ryszard Kapuściński

In this chapter we will talk about…

Travel statements and different ways of thinking about the experiences lived during the holiday, associative thinking functioning, and strategies to help the autistic person reframe the aspects of the trip that have just ended.

In this chapter you will find...

• Explanations on how associative thinking works

• Suggestions on how to use helpful tools in the reframing of the journey

• Operational strategies for improving the reframing of the holiday experience

• Useful tips to ease the transition of the journey home.

Time to come back

We have now made it to the last chapter of this book: we hope that reading through these previous pages has helped the reader feel inspired by the feasibility of a holiday experience with an autistic person. Whether you are a first-time traveller or a more experienced one, whether you have not yet embarked on your first departure or are planning the umpteenth trip of your life, know that every kind of adventure has a beginning and an end; in our case, a round trip.

There can be so many after-return reactions that you can experience once you get back to your daily routine; we all tend to take stock and make evaluations, weigh up what went well and what should not be repeated, draw conclusions and use what we learned as a guiding reminder, for planning the next experiences. In general, then, we can conclude that every type of journey carries something with it and that it is we who, with our reflections, characterise these elements with our judgements. Let's take an example.

We have just got back from a holiday at a seaside resort. We had a nice relaxing time and ate well at the hotel where we stayed.

Let's think...

The weather was a bit uncertain, we could not fully enjoy the beach due to a few half-days of rain, but never mind: we spent that time doing some shopping or entertaining ourselves with some indoor attrac tions.

We only remember one moment of this experience with disgust: the night we wanted to try that recently opened fusion restaurant where, unfortuna tely, dinner was a disaster; inedible dishes, slow service and in our opinion the quality of the restaurant was poor. The good old familiar places and the meals we had in the hotel were so much better.

Now, we believe we can play it safe by saying that the balance of our holiday experience will be generally positive:

• we will emphasise the successful situations;

• we will, anyway, try to save the positive alternative experiences we had compared to the original plan of going to the beach;

• we will evaluate the hotel and beach resort experience we chose as overall fulfilling, concluding that we will be able to repeat this holiday in the future;

• we will always remember that famous dinner that went wrong with disgust, but we will be able to label that single experience as negative, saving the rest of the trip instead; at most, we will be able to conclude that fusion restaurants are not for us or, instead, that we should give this type of cuisine a second chance, but in another restaurant.

Reasonings such as these are shareable and above all very understandable: this is because, in taking stock of what we have lived, most of us tend to synthesise or cognitively process the different experiences into a global judgement.

If we have enjoyed a holiday on the Adriatic coast on one or more occasions, we can draw the conclusion that we are seaside types and that we will most likely be comfortable in other similar circumstances; it is not part of our reasoning to think that we will only be comfortable in that particular place or in that particular hotel or on that particular beach.

Neurotypical reasoning allows us to extrapolate certain elements from our experience (for example, that we are comfortable at the seaside, that we like hotels with inclusive beach umbrellas, perhaps that we prefer sandy beaches rather than

pebbly ones, and other considerations), which we are then able to apply to very different contexts from the more punctual ones in which our specific holiday took place.

Otherwise, let us try to read some experiences that help us look at things from a different perspective.

ABSOLUTE NEGATIVE AND ABSOLUTE POSITIVE

Wewant to tell you the story of two different holidays experienced by Samuele, a young adult with autism who has considerable difficulty expressing himself verbally. One holiday dates back to when he was a teenager and one was spent more recently.

Several years ago, Samuele and his family went on holiday to Ibiza: a relaxing and leisure trip, hosted by a friend who had a house on that island. The first few days were punctuated by beautiful experiences, including a boat trip, the 'perfect' meals prepared for Samuele by this friend in the ways that suited him best, and delightful inland hikes; but then, one evening, while strolling along the promenade in the city centre, an unpleasant episode spoilt the magic.

While Samuele was a few metres in front of his parents, observing the details of the nightlife environment that was far too stimulating (in hindsight), he accidentally bumped into a young and drunk man; the latter, annoyed by the situation, showed off his rudeness by shoving and swearing at Samuele, who was incapable of a verbal reaction and completely bewildered by what was happening.

It was just a matter of a few seconds, long enough to be joined by his parents who immediately ran towards him, but the damage was done by then and reassurance and comfort were useless. The boy repeatedly head-butted the lampposts he ran into on his way to the car. Samuele's extremely high state of anxiety and anger and his violent self-harming gestures, which did not seem to calm down as the hours passed, led his parents, who were out of ideas and resources, to take the first flight back to Italy. Samuele only managed to cool down once he realised they were leaving that place. Even today,

many years later, when Samuele is particularly anxious or when something obviously reminds him of what he experienced on that holiday, he loopingly repeats phrases like 'Ibiza never again!', 'Not in Ibiza!

In spite of the bad experience in Spain, however, we are happy to tell you that Samuele has not lost the desire to go on trips or excursions. Growing up, he found many holidays stimulating, not only with his family but also with other young people and therapy workers, who accompanied him on several weeks of holidays around Italy. He especially keeps a vivid memory of a nice trip to a seaside resort where he spent relaxing days, without any unpleasant episodes disturbing him. Years later, Samuele asks for the following holiday to be in that place again, pointing out that it must be in the same hotel in such street and such number, on the exact same dates from... to..., with the same travel companions as those in his memory.

It is as if, unlike the above-mentioned 'synthetic' reasoning of neurotypical people, Samuele remains anchored to an 'analytical' memory from which he is unable to extrapolate elements that give him an overall image of the experience and can therefore be used as a yardstick for future choices. According to Samuele, the certainty of a peaceful holiday is only provided by the detailed repetition of all those elements he associated with the "successful" holiday, therefore a "safe" holiday can only occur in that place, on those dates, with those people and probably involving other details that we are unable to understand.

Starting from these two stories mentioned above, we immediately realise that in this case, as well, the protagonist was able to draw conclusions from his experiences. What, however, differs from our typical thinking is the way in which this evaluation is carried out, which is more linked to the detail that connotes the entire situation.

Our way of reasoning allows us to abstract the positive and negative elements of the various circumstances, resizing and

contextualising them, which enables us to arrive at an overall assessment that provides us with general information that not only can be useful in future planning, but also helps us not to undermine our memories with individual details that are incongruent with the overall judgement.

Instead, we must bear in mind that the associative thinking of people with autism is significantly different from our way of reasoning.

NB!

We should not expect thoughts and reasoning to be similar to our own, nor should we expect an ability to generalise the experience according to our own criteria, enabling us to answer questions such as: 'How did it go overall? In general, how do you think the experience you lived went? Did you have a good time on the whole?". Concepts like 'overall, in general, on the whole' are simply too abstract and vague for a person who thinks analytically. There is a much more specific and detail-related logic; what is also important in terms of making a judgement are aspects such as places, dates, streets, actions, the presence or absence of specific people or caregivers and other very real and tangible elements. "Did you enjoy the All Saints' Day holiday?" was Sebastiano asked and his reply was: "No!". Out of fifteen individual events he was asked to answer, "Did you enjoy it?" fourteen got a "Yes", but the fact that it was All Saints' Day, when "people celebrate the dead" spoiled everything: "It's not right to have fun on the Day of the Dead!".

In order to understand what has just been said, we must take a different perspective.

PSuppose we experienced a great event, a circumstance that did not trigger a state of anxiety, but was instead a source of well-being: would we not want to try at all costs to give it a

reference point? To have reminders that help us preserve it in our memory and retrieve it when necessary? Of course we would want that! And so would any person with autism.

The principle is the same what changes, however, is the type of these reminders, which are not conceptual and abstract like ours but indeed concrete, punctual and very peculiar to the point of being completely incomprehensible at times.

Thinking about it according to a typical reasoning, if we had a nice holiday in Caorle with mum and dad, in such and such a hotel with a swimming pool, next year we will probably be able to enjoy a week with the family, let's say in Forte dei Marmi, always choosing a location with a swimming pool (which we liked a lot last summer), but in a hotel that does not necessarily have the same name as the one we stayed in back in Caorle. Following the AC's way of reasoning, however, if we have to think of a nice future trip to take, we will ask to go back to Caorle with mum and dad, to the same hotel with the swimming pool: exactly like Samuele, who asks to repeat the same holiday that made him feel good and that, to make him feel good again, will necessarily have to include the same famous concrete references that defined it. If, though, it is not possible to recreate the same situation, as is evident, at least because year after year even Samuele is no longer the same, here comes the anxiety of the unknown that we have repeatedly mentioned in this book. The anxiety related precisely to AC in which there is a lack of conceptual references to process events into experiential syntheses, whose absence makes every experience totally new and unpredictable.

Similarly, if an unpleasant episode happens during our journey, the anxiety caused by the latter can be so high that it characterises the entire holiday experience, which then assumes a single negative valence together with all its concrete references. Exactly as it happened for Samuele, who experienced that very

unpleasant episode on the promenade: no matter how nice the boat rides were or how delightful other days were, that moment made the whole trip become a negative memory; for Samuele Ibiza is just that one episode, it cannot be anything else.

Tools for the trip

As already explained, we must therefore always bear in mind that the experiences of a holiday can be very different among the participants and that the way in which an autistic person assimilates the experience differs from our more typical way of processing it. That said, as conscious caregivers, it is our job to support the person in processing the various situations that occurred, to help them understand all the nuances of the holiday spent together.

Some readers might claim that, while travelling, so many great and little things happen that it is almost impossible to keep them all in mind or to give a certain meaning to some rather than to others, especially if the person accompanying us does not have the ability to express him or herself in a clear verbal manner or does not communicate his or her emotions about what happened. Situations like these can certainly create difficulties in providing clarification and help: sometimes all we can deduce is the result of observing the person's behaviour and attitudes, which, while lacking objectivity, is nevertheless a valuable resource we have available to help the other person. The advice we would like to give you is to look far ahead and to employ resources during the holiday itself that will then be spent on the way back, when further educational work may be needed.

A very useful strategy is to keep a detailed logbook, a practical way of keeping track of situations that occur during the holiday, to be carried with us to write down what happened, mark important details and impress 'in the heat of the moment' what we could understand about certain episodes that triggered positive or negative reactions in the person.

It is not necessarily needed to go around with a pencil and paper notebo ok, it will be more practical for those who are more tech-savvy to use, for example, the notes on their mobile phone, which are now always available at all times.

In addition to this, it will be important to take many photos and videos of the various moments of the holiday, not only to capture the good memories, but also to create material, which will be useful afterwards, for working with the person.

Simple tools such as these help us to keep track of everything that can happen and are then indispensable for our memory to lucidly recall the occasions when the person was well and had a good time as well as those times when he or she was nervous, had a breakdown or suffered great frustration, reflecting on the antecedents and the reactions experienced.

When we get back from our adventure, once we have finished the domestic and practical tasks that are necessary for everyday life, we should take some time to revise all this material, so as to be able to choose the right way to proceed in helping the other person to re-elaborate what was experienced during the days of holiday.

Premises

Autistic people suffer a lot when faced with the unexpected. This is probably due to the fact that:

1. they lack the ability to realise that the unexpected, although annoying, will sooner or later come to a solution;

2. they do not have sufficient communication skills to ask what is going on and to get information about the unexpected;

3. they often struggle to ask for help;

4. they tend to be rigid and find it hard to cope with change;

5. they struggle to tolerate frustrations.

Protocol objectives

1. Teaching the person that the unexpected can be resolved or that, if the situation is unsolvable, there can be something to replace it and appease the frustration generated by the unexpected.

2. Favouring the unconscious association between Conditioned Stimulus (CS) - a symbol that is used to announce the unexpected: iconic, gestural, verbal - and reduction of the anxious response.

3. Implementing the ability to react to the unexpected with less anxiety and appropriate behaviour.

4. Giving parents and caregivers a behaviour protocol that reduces the anxiety of not knowing what to do when the unexpected happens and decreases the possibility for the autistic person to experience a breakdown.

Step 1 - Associating the unexpected with an image/symbol/gesture that identifies it

1. Get an image (or writing) that will act as a Conditioned Stimulus (CS) of the unexpected, declined either in a generic way (figure 1) or in a more specific way (figure 2).

UNEXPECTED

UNEXPECTED

Unknown person

2. Place on the visual, either fixed or mobile, calendar the activities you intend to carry out during the day.

3. Include among them an activity that is of minor interest to the person and of short duration; this is the activity in which the unexpected will happen for the first time. Possible examples.

Activity: Let's colour the Italian flag  Unexpected: there will be no red marker.

Activity: Let's print 2 copies of a file  Unexpected: there will only be one sheet in the printer.

Activity: Let's heat something in the microwave  Unexpected: the device does not turn on (because we unplugged it).

Activity: Let's water the flowers  Unexpected: We turn on the tap and no water comes (because we turned off the tap).

4. When it is time to carry out the activity, the unexpected happens. The Conditioned Stimulus (CS) of the unexpected is shown, making it explicit in words and combining it with a distinctive gestural signal (for example spreading the arms, which has the characteristic meaning of "we can't do anything about it"). Here are some possible examples.

Unexpected! The red marker is missing, let's work it out! We'll get it now.

Unexpected! One paper is missing, let's work it out! Now we'll put it in the printer.

Unexpected! The microwave is off, let's work it out! Now we’ll fix it (plugging it in).

Unexpected! No water is coming, let's work it out! Now we’ll fix it (we open the tap).

Remember that the words «Unexpected!» and «let's work it out!» must then begin to be used by all the reference figures in the various contexts that the person attends.

5. In this first step, the problem can be quickly resolved, because this unexpected event is manageable for us and because we will have already prepared its resolution in advance. Be careful! It will always be important to remember that the resulting solution must be equally or more rewarding than the situation would have been without the unexpected event.

6. This first step will take a long time, creating many ad hoc unexpected events, until you are certain that the association between the word "Unexpected!", pronounced and presented through the Conditioned Stimulus (CS) accompanied by the distinctive gesture, and the resolution of the event has been consolidated.

7. On the way to the achievement of success in the first step, gradually introduce the unexpected into more and more motivating activities.

8. Overall, throughout the first step, there should not be much time between the announcement of the unexpected event and its resolution.

Step 2 - Decreasing anxiety by extending the waiting time before the unexpected is resolved

1. Always use the symbol (CS) of the unexpected (image or writing) and keep it with you.

2. Plan an activity in the schedule of the day in which the unexpected will happen.

Start first with a neutral activity that becomes more and more motivating, but still one that cannot be solved immediately. Here are two possible examples.

Activity: Let's visit grandma  Unexpected: grandma is not home (we told her not to be there).

Activity: Let's get an ice cream  Unexpected: the ice cream shop is closed (we had previously checked that it actually was).

3. While the activity is being carried out, the unexpected happens. The Conditioned Stimulus (SC) of the unexpected is shown, making it explicit in words and accompanying it with the typical gesture signal. Here are some possible examples.

Unexpected! Grandma's not here, let's work it out! Let's try calling her.

Unexpected! The ice cream shop is closed, let's work it out! Let's go find an open ice-cream parlour.

4. The problem gets sorted out, but it takes a little longer. Possible examples.

– We tell grandma to be nearby and to come back after 2-3 minutes. In the meantime we say: 'Grandma will be here soon'.

– you get back in the car and go where you are sure (because you have already checked) that the ice cream parlour is open.

5. Be carefu! It is always important to remember that the resolution must be equally or more rewarding than the situation would have been without the unexpected. A possible example: the grandmother might have something with her that is very pleasing to the person (such as candy, for example) and say: 'Look, I just bought these good candies!'.

6. A lot of time should be spent on this second phase, creating many ad hoc contingencies, gradually extending the waiting time and gradually introducing the unexpected into more and more motivating activities.

7. Also in this second step, it is important to plan things so as to be sure that the problem will be solved within the foreseen timeframe.

Step 3 - Rescheduling the activity to a later day

1. Always use the symbol (CS) of the unexpected (image or writing) and keep it with you.

2. For this third step, it is important to have a calendar or a weekly planner.

3. Plan an activity in the calendar that cannot be done. You will find two possible examples below.

Activity: Let's go buy a magazine  Unexpected: it hasn't arrived at the newsstand yet, it will be there tomorrow.

Activity: Let's go to the swimming pool  Unexpected: the swimming pool is not accessible / the caregiver can't take you / the car won't start, etc...

4. We announce using the known methods that there is something «Unexpected!», and shift the map indicating the activity to the next day and, gradually, to two days later, three, one week. If the person uses a handwritten calendar we cross out the writing and rewrite it on the scheduled day.

5. The person is encouraged to move on to the next activity or to replace the skipped activity with an equally rewarding one. Here are two possible examples. You can say: 'Well, we can't get the magazine yet, but you can get a pack of the cards you like'. Or you can say: 'Well, we can't go to the swimming pool, but let's go get an ice cream'.

6. It is important that on the scheduled day the appointment is kept.

Step 4 - Replacing the activity: the unexpected does not work out

1. Always use the symbol (CS) of the unexpected (image or writing) and keep it with you.

2. For this fourth step, it is also important to have a calendar or a weekly planner.

3. Plan in the week's calendar an activity that cannot be done. A possible example is provided below.

Activity: Let's go for a picnic in the mountains  Unexpected: it's raining so we can't go, neither can we make the rain stop.

4. This unexpected event won't be resolved immediately (even if it stops raining, the grass will remain wet) and therefore the activity must be rescheduled.

5. We announce that there is something «Unexpected!» in the usual way and prepare replacement activities that are equally rewarding.

You can say, for example: 'We can't have a picnic because it's raining, but we can:

a) go bowling and eat pizza;

b) go to the cinema and eat popcorn;

c) go for a walk to the mall and eat a hamburger'.

These alternatives can also be proposed to the person for him or her to choose, assuming that he or she is able to make a choice. Otherwise, it will be the caregiver to propose only one alternative, knowing that this will be appreciated.

6. La persona potrebbe obiettare che lei vuole il pic-nic. Allora diremo che lo faremo sicuramente un’altra volta (non precisata) e la metteremo nel programma appena possibile.

NB!

Precisely the example of the picnic should make us think that, when we structure a programme in which the activities could skip due to meteorological issues, we can, already in the programming phase, include the so-called «plans B», or add the options:

a) if the sun is shining, we can do this

b) if it is cloudy, we can do that.

For this, you can use symbols like:

Let’s do this

Let’s do that

The aim of this book is to help people with AC (Autistic Condition) and their families to stick their noses out of their homes, to go travelling, to get to know the beauty of our country and that of the rest of the world, providing advice and tools that make the experience of travelling enjoyable and ‘manageable’.

The text is presented as a practical and functional guide, a concrete training which, through ten stages, accompanies the reader in discovering the most useful strategies for planning a holiday with and for people with autism.

If we want to help people with autism, regardless of being children, teenagers or adults, to live better, we must be aware that their lives are full of anxiety experiences, which can sometimes become intense distress, fear and sadness. The more we can make predictable what awaits them, the more we can provide answers to their questions, even those they cannot formulate, the more we can make them feel safe and reassured.

Travelling, stepping outside the box of everyday life, is possible for people with autism and their families, as long as the ‘luggage’ is well prepared each time, in other words, if a good planning is carried out. Also, be prepared for the inevitable bumps in the road.

Being ‘people with autism’ does not mean being sick, but being people, first and foremost people, with a different functioning. BOOKS THAT HELP