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.


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.


The difficulties that get overlooked when your autistic child is verbal

I am blessed with a daughter who has a large vocabulary and clear dictation. She can read fluently and make up complex sentences. She can remember accurate facts about things and repeat these readily. She can make choices, recall events and express her opinion.

As a result of all of the above it is assumed (wrongly) that her autism is mild, has limited impact on her life and something to be of little concern about.

People are too quick to assume if a child is verbal that everything is fine. 

Let me assure you that just because an autistic child can speak it does not mean their autism is mild.

Having speech does not mean a child necessarily understands what you are talking about.

Having speech does not mean there are no learning difficulties.

Being able to talk does not mean a child can effectively communicate.

Most of my autistic daughter’s speech is something called ‘complex echolalia’. She remembers sentences and phrases from things she has read or heard and uses them to allude people into thinking she is coping socially. This is a common coping mechanism in girls with autism. They become adept at hiding their difficulties by quoting from others be it from movies, books or friends. It took a highly skilled speech therapist to diagnose this in my child but once pointed out it was so obvious. When she was younger we could pick out phrases from Thomas Tank engine, or Peppa Pig or sentences from well read children’s books I would read to her at bedtime. Her vocabulary was not being used independently but more ‘cut and pasted’ from one situation to another. This is much more common with autism than people realise.

Your child may appear to be talking but is it spontaneous language or an echo of something they have heard many times before but do not actually understand?

People assume because my daughter can talk that she is socialising. ‘She chats to friends in the playground’ is a common phrase used by schools to assume a child with autism is socialising well. What in fact she is doing is listing every  ‘shopkin‘ she owns in alphabetic order or inappropriately telling another child they smell awful today! It is talking and it is to another child but it is not social reciprocal play and she is not making friends!

Many also assume because my child can speak that she can not possibly be anxious! That is a myth. Anxiety can manifest in so many ways and if asked a direct question my daughter will attempt to answer even if her anxiety is making her feel physically sick. Anxiety in verbal people with autism can actually make them say things that are considered rude or hurtful or even cause them to repeat the same phrase or question over and over. These are ‘coping mechanisms’ to help them cope with the extra stress of certain situations.

It is assumed because she is verbal that she understands emotional and intention. That is like saying because a baby can walk they can do ballet or play football! It is dangerous and worrying that even teachers assume because a child has the physical ability to speak that they are able to cognitively answer complex emotional questions like ‘why did Billy hit you? Or ‘how do you think I feel about you saying that?’ A verbal child with autism may still struggle with emotions and verbalising events that have happened. They still struggle with seeing things from other perspective or being able to break down facial expressions. We need to remember they still have autism even if they can speak and not make assumptions based solely on the fact we appear to understand what they tell us.

My daughter can speak but don’t expect her to tell you if she is in pain or where. Don’t expect her to understand metaphors or euphemisms or jokes. She can not grasp double meanings and understands language completely literally. ‘The sky looks heavy today’ to her means it is about to fall down! Don’t stop her half way through her lists or even her sentence as you interrupt her echolalia and therefore her brain’s ability to decipher the world around her.

I am eternally grateful she can speak. I have a son who is entirely non verbal at 8 and I know the pain of never hearing your child talk.

However, I also know the pain of seeing my child’s difficulties ignored just because she is verbal.

We must look at autistic children individually. We need to look past the words they speak and see beyond the sounds we are able to understand. Under the surface of speech lies so many other difficulties that require ongoing support. 

If you know someone with autism who can speak never make the assumption their autism must be mild. There is so much more to autism than just being able to talk. Words hide much more than we ever think.