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World Autism Awareness Week 2019

1 April 2019

You may have heard the saying “When you have met one person with autism, you have met one person with autism”.  This is certainly true, and through my work as a parent volunteer with the National Autistic Society, and by being a member of a charity called “Thrive” I have met many wonderful children and young adults with autism spectrum condition who are all wonderfully unique.

 My son was diagnosed with autism at the age of 3. At that age the most prominent difference between him and his peers was lack of speech.  He is now 8 and still currently pre-verbal, he has no speech.  People are usually quite shocked when I explain that he can’t talk, and I’m sure they must wonder how it’s possible to get by without speech.  Actually, he manages very well, he uses an iPad which has grid software (pictures/symbols) and he is also very good at using gestures, pointing and giving eye contact when he has something to say.  In fact, lack of speech probably has least impact for him compared to the other co-morbidities that present themselves alongside his autism.

He also has sensory processing difficulties, severe anxiety, obsessive compulsive disorder, hypermobility and learning differences.  These co-morbidities are very common in people with autism spectrum condition, they can impact their lives to various degrees and it may not be obvious that some behaviours may be a result of one or more of these conditions. 

Sensory-wise, he is both under and over sensitive in the 7 senses: vision, hearing, taste, smell, touch, proprioception (the perception of body position, which is important for balance agility in movement) and vestibular. This means that he struggles in noisy or bright environments, has a restricted diet, craves deep pressure and hates light touch.  He is also flaps and bounces about a lot.  This is a self-stimulatory behaviour (STIM) which he does to regulate himself.  If he becomes un-regulated, this quickly leads to a meltdown.  We build activities into his day to keep him regulated, the most effective activities include bouncing on a trampoline and swinging on his nest swing.  He also loves the water, which really helps to relax him.  Meltdowns are a lot rarer these days as we’ve learnt to recognise the signs and intervene early before it builds and reaches the point of no return.  At this point he is no longer in control of himself and as hard as it is, we have to let him ride it out in a quiet dark space.  Any intervention just makes things worse.  Autism has taught us a different approach to parenting – we found that the traditional methods do not work and once we accepted that, it was so much easier to move forward.

His anxiety has certainly increased as he’s got older.  It really has a significant impact on his life, often he struggles to get out of the car when we go out.  Symbols help a lot to prepare him and manage his expectations, but some days it’s just too much for him. He likes routine and “sameness” and unexpected changes to routine can often upset him.  Once you’ve taught him a rule though, that’s the rule, which is a mostly positive attribute! The OCD usually manifests itself when he is most anxious. It includes shutting doors, closing/zipping bags, and putting things back in exactly the same place. They may seem like fairly minor obsessions, but if it’s not right meltdown ensues.

Hypermobility means that some or all of a person’s joints have an unusually large range of movement. My son gets tired easily and we depend on a wheelchair for distances or unfamiliar places as he can drop to the floor if he gets tired or he freezes to the spot when anxious.  We often get surprised looks from strangers when he jumps out of his wheelchair to run to a swing!

It’s now 5 years since my son’s diagnosis.  Going through diagnosis was really tough, and as a parent there’s the question over “labelling” your child with a diagnosis.  From my experience, diagnosis is just the beginning of a journey, and unfortunately in many cases a fight to access services.  Without diagnosis it is incredibly hard to access support for your child.  When my son started education he first went to a mainstream nursery – despite having a diagnosis, and no speech the local authority determined that there was not enough evidence for him to access specialist education. It was obvious from day 1 that this was not the right educational setting for him, so I documented everything, all conversations with professionals and diaries/videos of my sons behaviours and I shared these with the professionals responsible for his care.  I followed up on meetings and sent e-mails – I did not rely on conversations with educational or health professionals and I always shared reports from one with the other.  The result was a statement of special educational needs (SEN) stipulating that he required specialist education.

My son now attends Ysgol Y Deri, a fantastic SEN school in Penarth.  The teachers are amazing and take wonderfully different approaches to teaching whilst also building sensory activities into his day so that he regulated and ready to learn.  I don’t like the phrase “learning difficulties” when describing people on the autistic spectrum.  The difficulty comes to those who do not know how to teach autistic children.  I prefer to say that my son learns differently to his peers.  In school he loves to play the harp and the drums and enjoys the welsh language.  He loves the library and has recently started to attend surfing lessons.  He is interacting with his peers and has two special friends who he giggles with.  My heart bursts with joy when I think about how much he has achieved.  Autism is an intrinsic part of my son, but it doesn’t define him.