Autism: When Mid-Spectrum Often Means Misunderstood

My husband has autism.

My son has autism.

My daughter has autism.

They are all very different yet very similar.

My husband is considered ‘high functioning’. He can drive a car, shop on his own, has lived independently in the past and been employed. He was not even diagnosed until 59 such was the level of his functioning. He, of course, still has his struggles but to many at first glance these are not obvious.

Then there is my son. His autism is extremely obvious and he would be known to many as ‘low functioning’. He has no spoken language (non verbal) and is not potty trained at 9. He requires 24-7 support and will always need this throughout his life. He has significant learning difficulties and can not write any letters or numbers nor can he read. His cognitive function is that of a baby in most levels and at best a child of around 18 months though his physical body is 9. He has other co-morbid conditions too including the genetic donation NF1.

Then there is Naomi. Mid spectrum and misunderstood.

Not severe enough to get on-going support.

Not severe enough to receive speech and language.

Not severe enough to have any legal educational support plan.

Not severe enough to be entitled to 1-1 support at school.

Not severe enough to get a placement out-with mainstream school.

Not severe enough to be able to access Occupational Therapy.

Yet:

Not high functioning enough to manage without ongoing support.

Not high functioning enough to not need speech and language. In fact as a selective mute child she desperately needs support!

Not high functioning enough to be coping without a legal support plan yet this seems to be a never ending battle to convince education!

Not high functioning enough to manage all day every day without 1-1 support, although she is being forced to as no-one seems to see her struggles!

Not high functioning enough to manage in mainstream fully yet there is no other options available. She is in the strange position in that mainstream is right for her 75% of the time yet there is no support for the times she really struggles.

Not high functioning enough to get occupational therapy despite still struggling with everyday skills everyone else in her class is able to do with ease.

So she is left. Misunderstood and ignored.

What about all the thousands of children with autism who have no learning difficulty but have mental health struggles by being made to fit into a round hole when they are not round? What about the children able to mimic and hide themselves within a mainstream class but who still have massive sensory issues and social struggles?

What happens? Let me tell you in my experience what happens to these ‘mid spectrum’ kids:

Their mental health suffers from being misunderstood and being expected to be ‘normal’.

They become masters of the ‘hold it together’ club and then explode at home from not having the necessary support needed all day at school.

They lose confidence as they struggle to make and maintain friendships without anyone able to help them.

Some develop challenging behaviour as a result of coping with demands to not be autistic all day.

Some go on to feel ashamed of their autism yet they are not ‘high functioning’ enough to be able to hide their traits.

A growing number are now leaving mainstream school and being forced to be home educated as there is nowhere else suitable for them.

Many ‘fall through the net’ and by the time they reach teenage years they are lost in the system and even more misunderstood.

Not everyone with autism is able to be like my husband and make it through life without strangers noticing anything different (I say strangers as anyone close to my husband is able to see his difficulties) Equally not everyone with autism has learning difficulties or is non verbal.

Most people with autism lie in the invisible, misunderstood area, known as mid spectrum. It’s sort of like having one foot in one world and another foot in another world. Sometimes their autism is obvious, sometimes you would struggle to see it. Sometimes they are comfortable being with neurotypical people (those of us not on the spectrum) and sometimes they are much more comfortable being around their autistic peers.

Caught in the middle.

Very much autistic but able to (sort of) live in a neurotypical world for periods of time.

Mid spectrum autism: for many that can be summed up as misunderstood.

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YouTube and Autism: The Magical Combination 


As I browsed the shelves of a local toy shop with my kids recently my daughter became rather animated and excited over something she saw.

“Hey, mum, I know what this toy does! I’ve seen it on YouTube!”



She had indeed. She knew everything about the toy from who made it, what came with it and she even knew the best way to ‘unbox it’.

 
It was not expensive and she had some birthday money to spend so we duly took the toy to the checkout where staff smiled at my 8 year old and said, ‘Good choice! Did you see it on YouTube too?’

Apparently the way to sell toys now-a-days is to simply have Ryan from ‘Ryan’s toy reviews’ or Cookie Swirl C film themselves buying them, taking them out the packaging live and playing with them. Kids are hooked on channels like this and many others and it is changing life more than we may realise. Some of these channels are so popular they get more views in one day than well known TV shows. 

 
My daughter was delighted with her purchase and could not wait to get home and comment to her ‘virtual friend’ on her favourite channel that she too had the same toy now! As we drove home she chatted away about how The Engineering family had not reviewed her toy yet and maybe they would soon too but that Cookie Swirl C loved it and she had promised to make a new video of it this week.

 
So what is my point in sharing all this: Well you may not know this but my daughter has autism. She finds communication and social interaction challenging. She is seen as different, she struggles with huge anxiety and leaving the house can be a massive challenge as transitions cause her so much stress.

 
To see her excited in public and able to overcome her anxiety enough to be able to speak, to communicate so freely and connect with me, to see her interested in something other children also like; these are all magical to me. Autism and YouTube is a magical combination to my daughter and a magical combination to me too. 

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My daughter is a visual learner and needs sensory stimuli to aid her learning. YouTube provides this so we use it to learn times tables, spelling, topic work for school and so much more. This way she is seeing, hearing, able to repeat parts over as often as needed to process, and she is in control by using her own tablet. It’s truly magical to see her finally understand something she could not grasp previously because she watched it on YouTube.



When we have to go somewhere new or unfamiliar like ten pin bowling we can type into YouTube what we need and hear and see the experience before hand. It takes social stories to a whole new level! It prepares her for sensory experiences in advance and she is able to suggest having ear defenders in order to cope. This makes her feel safer and more in control and makes the whole family at ease. That’s amazing!

 
When she struggles to know how to play with toys she can watch so many others (adults and children) play with play doh, playmobil, Thomas tank engine trains and so much more to learn ideas. While she may copy them she is still using the toys appropriately which is more than she was able to do before YouTube. That is magical.

 
YouTube helps her make friends and connect with others in a way that nothing else has. While her friends watch different (more grown up) TV shows or attend social activities she can not cope with they totally understand and connect with her when she mentions things she has seen on YouTube. It’s like suddenly she speaks the same language as everyone else. That is special.

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When she struggles to sleep (common with autism) we can find some quiet soothing music on YouTube, when she finds food stressful we can find a video of kids in a bath of jelly to make her see food is not to be feared, and when we are going out we can use a visual countdown on YouTube to help her transition.

 
If she likes YouTube then I will find ways to like it too. It is not just about nursery rhymes with Little Baby Bum or Stampy playing Minecraft, YouTube can be used to help autistic children (and adults) in so many ways. 



Oh and don’t forget that no matter how unusual their obsession may be there is most likely someone making YouTube videos all about that too!

 
Is your autistic child addicted to YouTube?

 
It doesn’t have to be all negative. Autism and YouTube can sometimes be the most magical combination ever!