Every day is Autism Awareness Day for me

Autism books and lego star wars figures

In America April is National Autism Awareness month, International Autism Awareness week is the first week of April and World Autism Awareness Day was the 2nd of April this year, however for me and other people like me every day is autism awareness day and has been for the last 11 years.  You see I am a very proud mum of an autistic child, I am immensely proud of both my children.

When I first tell people that I have an autistic child I usually see a look of pity cross their face and they often say something like “oh I am sorry” or “that must be hard.”  However, I am incredibly lucky, my son is 13 and has a diagnosis of High Functioning Autism and Dyslexia, and he is funny, clever, caring and considerate.  He goes to a local mainstream secondary school and has support there, which he has had all the time he has been at school.  He even has a best mate and a group of friends, if you are a parent of an autistic child you will know how brilliant it is that he has friends.

Our autism journey hasn’t always been easy, at 18 months my son didn’t say any words at 2 and half he still didn’t say any words, the assessment process through to his diagnosis of High functioning autism with an associated language disorder took a year, by which time he still didn’t speak.  However, I knew from when we started the assessment process what the diagnosis would be, as the lady that started the process off used the phrase “He is in a world of his own!” as soon as I heard that phrase I thought it is autism.  When we got the diagnosis a year later it was a relief.  It was also a huge blow because it meant that our son would not have a “normal life” there were now more questions.

  • Would he ever speak? He was still non verbal and we were using Makaton sign language to communicate, but no one could tell us whether he would start to talk or when that might be. He actually started talking around 5 years old
  • Would he be able to cope at mainstream school?
  • Would he be able to make friends?
  • How would we cope?
  • How could we help our son to have the best life possible?
  • And so many more.

Fast forward 11 years and there are days when I forget about the autism, yes my son is incredibly passionate and knowledgeable about Star Wars and knows way more about history and historic events than I do.  Yes, sometimes he talks at you about Star Wars or Top Gear.  Then there are days when I am reminded that he is autistic and will always experience the world differently and he will always face challenges that other neurotypical children and adults won’t face, from T-shirts that itch one day and not another, to sausages at restaurants that have some seasoning in that means he can’t eat them.  He will always find socialising difficult and confusing and so many other things.  But he is brilliant and doing so well, far better than we could have hoped 11 years ago and with love and support he will continue to do well.

Autism is often called a spectrum disorder, with classic autism at one end and high functioning autism at the other, this over simplifies autism, which is very complex.  Rather than thinking of autism as linear, think of a triangle, each point of the triangle represents one of the triad of impairments

  • Social & Emotional issues
  • Language & communication
  • Flexibility of thought

Triangles can be different shapes depending on where the points of the triangle are, so for example some autistic people are non verbal, while others can speak a lot but have issues understanding the social aspects of communication.  Some find social interaction easier than others but might have very strict routines and ways of doing things.

This is a great Ted Talk by Rosie King talking about autism and her experiences, oh yes girls can be autistic too.

There are lots of great books about autism and I have read quite a few of them.  Basically the autistic brain processes information differently to a neurotypical brain, autistic people see the world differently to other people.  Temple Grandin is an American autistic women, who is a scientist, a university professor and author.  As a scientist she has had numerous brain scans to find out why her brain processes information differently and she talks about this in her book The Autistic Brain.

There is huge variation in children and adults with autism, some of the main issues they have in common are as follows:

Social and Emotional issues

  • They do not automatically understand how society works
  • They find it hard to socialise and work in groups
  • Because the world is a confusing place they have high levels of anxiety and suffer from depression
  • Routines can be important to help an autistic child or adult stay calm

Language and Communication

  • Language delay in children
  • The need to have things explained to them in a very literal and clear way
  • They don’t tend to filter what they say, unless you explain what is ok to say and what isn’t
  • There may be issues with understanding how conversations work, they may talk at you

Flexibility of thought and imagination

  • This can cause problems for children when it comes to creative writing at school or role playing
  • If routines or plans are changed without warning
  • Their way is the only way to do something

Sensory sensitivities

Sensory sensitivities can affect any or all the senses and are unpredictable, think of what you smell, hear, taste, see or feel being turned up.  So that T-shirt you wore the other day now itches and you can’t think of anything else apart from how it itches.  One of the reason why autistic children tend to have meltdowns in Supermarkets is because of the sensory sensitivities, think of the bright lights, the smells from the bakery and the fish counter and the laundry aisle, then add in the noise from the fridges, the echoes of the large building and all those people and multiply this by 10 or 100. Then add on that, that child might also not be able to tell you what the problem is because by now they are at such a high level of anxiety.

Below is a video by the National Autistic Society about how an autistic child might experience a shopping trip.

Sensory sensitivities also cause problems with children having a very limited number of foods that they eat and no sticker chart or reward system will get them to try those unfamiliar foods, that taste or look different or have a different texture.  As an autistic mum the worst thing you can read on food packaging is “new improved recipe” because your child will be able to taste the difference and to them it will not be a new improved recipe, it will be different and different is not good.

This article is quite basic and based on my experience of autism and I know there are people out there that have found it difficult to get a diagnosis and therefore the help and support they need for their child, below are some websites that you might find useful for finding out more information.

National Autistic Society there is a lot of advice on their website.

If you are in Lincolnshire or near Grantham then check out Grantham Autistic Information Network’s website they also have a great Facebook page.

Lincolnshire Autistic Society

2 thoughts on “Every day is Autism Awareness Day for me

  1. Sarah Arrow

    Thanks for sharing your journey Jackie. My youngest daughter has ADHD. Despite the popular conception that they have the attention span of a gnat, it’s not widely known that they have stamina… why run 100 yards when you can run three miles? She has no off switch and no filter… and despite all of this she’s an amazing little girl who is on the pathway to becoming a national martial arts champion. Your son could win Mastermind for Star Wars or Top Gear, he will go on and do incredible things all thanks to you not giving up and encouraging. As I tell Kevin… We can sleep when she’s left home….

    Reply
    1. admin Post author

      Thanks for commenting Sarah. I am lucky that my son sleeps, although he gets up early, as I need my sleep to function fully. My nice, kind, caring, patient mum persona goes out the window and I become the snapdragon without sleep, not nice to be around. Lol.

      Reply

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