ULLAPOOL mother Morven Da Forno is fully aware that while the summer holidays represent six long weeks of freedom for many, for children with autism it is a break in routine which can prove upsetting and disorientating.

Morven’s eleven-year-old son Luke has high functioning autism, also known as Asperger Syndrome, and she has decided to share her experiences to help others affected by the condition get the most out of the upcoming holidays.

“The six week school summer break can be a great opportunity to try new experiences at Luke’s pace, venturing into new environments with different sights, sounds and smells,” she said.  

“However, many children with autism rely heavily on a routine and familiarity. The prospect of change can be frightening, upsetting and disorientating. The sensory overload and the radical change in routine can increase the child’s feelings of anxiety. Sometimes a child with autism will withdraw, even those that are articulate may struggle to communicate verbally if they cannot cope as their senses become overwhelmed. This can result in what looks like a ‘meltdown’.  An extremely unpleasant experience for the child and family to go through.  It takes time to recover from this sensory crash.

“Parents of a child with autism want them to have a fantastic summer, but when days don’t go so well you can feel drained, disappointed, isolated and even a bit of a failure. I’d like other parents to know that there are at least 1,000 mums and dads in the Inverness area who have similar experiences and great advice to share and support each other. Many of them are members of the Inverness branch of the National Autistic Society.” ( we would include a hyperlink direct to NAS Inverness here)

Morven believes that dealing with a “meltdown” situation can be less stressful if onlookers are open-minded and supportive rather than judgemental.

“Sometimes when you’re out and about in the holidays and your child is confronted with the unexpected, or a challenging social situation they can panic and react in quite a dramatic way. It can be difficult when it happens and is often in a very public place,” she said.

“Autism is known as ‘the invisible disability’, so to an outside observer it can look like your child is just being difficult or naughty when they are actually really stressed, as they struggle to process what’s going on around them and cope with the anxiety of it all, like a mini nervous breakdown.

“When people stare, tut or sometimes even make hurtful comments you want to explain, but often your hands are full just trying to contain things and re-assure your child to bring them back to calm. It would be great if there was more awareness of autism, so that people would see the situation for what it really is, be open-minded and supportive to the parents and not judge, which just adds to the strain the family is under. If someone had fallen out of  their wheelchair and shouted, we would hope people would help them. Children having a meltdown have lost their support and are vulnerable just the same.  The child and parents/carers are so grateful when there is positive, supportive responses from those around them.  I promise we’re both doing our best all day, every day under circumstances that can sometimes be pretty tricky for even the most experienced parents! 

“The holidays are also an opportunity for others to see that children and adults affected by autism have a lot to offer. Everyone is different in one way or another and have strengths to be brought out and built on.

 

Kindness, empathy and reassurance go a long way towards happiness for anyone with autism, minimising anxiety levels.”

 

Morven, has some simple advice that can help families get the most out of the summer break.

“In the summer holidays we get out and try new things but always give our son an escape route, breaking it down to taking one step at a time. If we’re trying a new day out, we look at photos and information on their websites and in brochures to help Luke prepare and answer his questions.  We drip feed the information to reduce anxiety and withhold information that may cause worries or high levels of excitement to reduce anticipation.  It is a delicate balance. We always plan a quiet day ,before and after an event to allow his senses to cope.  We say “Let’s go along and have a look and if we don’t like it we can leave,” she said.  “It is meant to be fun after all.”

“The reassurance and trust in us, usually gives our son enough confidence to explore further to the next step. Sometimes we decide to leave if it is not proving beneficial for us all, or one of us will leave with Luke so that my daughter does not miss out, but mostly it’s a fantastic success with an enjoyable outing for us all. Luke gaining pleasure from a new experience feels like a real achievement.

“We opt for places that allow maximum freedom with minimal safety issues, so the Highlands and Islands are great. We plan outings to never be longer than about two to three hours and have to be flexible so they can be cut short, if necessary. When we have been tempted to stretch this or gone to places that need concentration and good navigation ability, it has nine times out of 10 resulted in the inevitable overload and significant risk.  We were reminded of this recently when Luke strayed very close to the edge of a new walk by a Gorge.  He was aware to avoid it, but he could not as his senses were processing slowly due to overloading.  We are always learning and adapting but in a progressive way.

“Trips to quiet, rural beaches are a big hit. Layers of clothes help adjust the temperature to keep him cool and a cap which also gives a feeling of security to help his navigation ability (proprioception).  I take a bag like Mary Poppins…. full of bits and bobs that help in lots of situations such as cold water, back issues of the Beano (a favourite), tangle toy fidget puzzle, reactions hand held mini game, sunglasses, hat and last reserve is our new addition, the DS! If it means a good time is had by all rather than staying shut away at home, it is worth the preparation.

We organise 1-1 play dates and try not to clash with my daughters so that the noise levels and communication needed is minimal to have higher chance of a better outcome and the friendship growing.  Luke loves the Summer holidays because he can follow his interests. We try to be child centred where possible on our activities or we ensure it has an aspect or motivator that will appeal to him.  This means we all enjoy the holidays more.  Luke has a phobia of  wasps and flies and this is an obstacle to enjoying many things so we have to have strategies to cope with this, even if that is Luke going back to the car to wait for us, cutting it short or he stays at home or does a different activity.  We try to keep things balanced so the whole family can pursue things that interest them without undue stress. 

“We use a useful scale from the Alert Programme to gauge how my son is coping  (provided by Occupational Therapy). He will tell me how his engine is running.  High, Just Right or Low and I support him finding the strategy to help him get adjust it as needed. It  is an indication of whether he needs quiet time. A walk down to the sea front or by the river is very relaxing, listening to the sound of the water and watching the birdlife.  A new DVD of a favourite film is a great reserve for difficult days to calm things down, especially one that will make him laugh. I often have a root around the charity shops for DVDs to keep in reserve for holidays.”

The Summer can be great with positive support, lots of planning and flexibility around you.