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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