Autism: When Mid-Spectrum Often Means Misunderstood

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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.

37 thoughts on “Autism: When Mid-Spectrum Often Means Misunderstood”

  2. THank you Miriam for this post. My nephew 8 years old, has just been diagnosed as autistic. He has dyslexia and sever learning disabilities. He is great at sports but mentally unable to cope with school etc. Then I have a another nephew (7) who was also diagnosed but his problem is social with anger and violent outbursts. It’s good to know there are divers kinds of autism and each need to be treated differently. By the way, the boys are cousins with different parents.

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  3. I love your posts and this one rings bells with me. In my previous work life I came across lots of children like your daughter who didn’t fit in one or the other world. It is such a shame that support is not there. I hope that your daughter does get the support she deserves to help her cope with life at school. She seems to have an awesome mum who is the rock of the family ❤ to you all.

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  7. It’s difficult but we need to raise awareness wherever we can. I’m starting a mini series of only one minute every monday to help people not familiar with Autism be more aware. Please have a look and comment with more topics and suggestions. https://youtu.be/d07J81WakUg This is a sensitive subject to many parents and autistics themself. I’m a father of a boy who is autistic….and people have no clue! Scary thing is how little close family even know. And sometimes not even interested.

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  8. Hi Miriam. These labels are not helpful. My son has autism and other issues. He can speak and that disguises so much. He was described by a neuropsychiatrist as one of the most complex boys he has known. As you say it is the hold it together club.

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  9. Yes, I totally understand. My 19 year old son falls between mainstream and special needs. He is mildly autistic and has a receptive language disorder, and short term memory difficulties. He is a very visual learner and he has managed two C grade GCSE (art and photography) and functional skills 3 for English & Maths after post 16. We chose the special education route to avail of all the therapies but at times feel that special education route has isolated him from his mainstream peers making it harder for him to make friends, less opportunity to be /feel accepted, unfortunately leading to mental health problems. One good thing is he loves learning and he can keep himself busy for hours researching his own interests on the internet , but he has no interest in other people or being social. The other option being in mainstream with large class sizes and little help, I don’t think he understands how lucky he was really. I do wonder if I fought for the correct path for him and if I had chosen mainstream would it have been better….

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    • I know this won’t be very helpful for you, for we always think about the things we could have done and didn’t do, but I will say it anyway. Do not blame yourself for having taken your son to special schools, it can seem that he was isolated from the world but at least he fit in his own world. I also have mild autism and I would give anything to go back in time and convince my parents to take me out of mainstream school and bring me to a special one

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  10. My son is severely autistic and they say my son is too severe for speech and language therapy, too severe for special needs camps, too severe to find someone for 10$/hour to watch him and give me respite for a couple hours a year, yes he has a 1 on 1 at school but all it is, is a glorified babysitter. The more severe the child the harder it is for the child in life with or without help. The more functioning they are the better off they will be later on with or without help compared to the more severe. Of course they will do even better with help but when it comes down to budget and they have one person left for a one on one but you have 2 kids on the spectrum obviously they will put them with one who will run out of the school into traffic rather that the one who is a bit behind the rest of the typical kids\ socially academically or otherwise.I have a question say you didn’t have a one on one for either of your kids but they came to you and said they found one and they asked you which child you want the one on one placed with, what would you say? Of course you would say the one that is more severe and why would you say that? because safety wise and otherwise your severe child needs it more right? the reason there is allot out there for the high functioning is because most fit in to the typical services provided, the reason my son doesn’t receive what the the less severe receive is supposedly because they say he is too severe and that things like speech therapy would be services lost on him and wasted when a less severe child that is moderate or high functioning will benefit from. other than a one on one at school which is absolutely necessary for my son so the school can cover their own legalities my son nor I receive any services regarding his condition. So your issue shouldn’t be that the moderate are left out more than the severe or the high functioning it should be that there just aren’t enough services or people working with autism to cover the load. My son is an only child has no play skills, pings his spit everywhere constantly, is in diapers, smears feces everywhere, has no concept of danger, no communication not even pointing or waving, likes to smash and break everything and hits, kicks, bites, scratches, headbutts, takes off any chance he gets and always runs for traffic, and so on…… There isn’t enough out there for any of them, but I stand by the fact that the higher functioning they are, the better shot they have at life with or without help compared to the most severe even if the severe got all the help they could, which they don’t. We need to stop looking at who gets what and start raising awareness that everyone on the spectrum needs some help and the more severe they are the more they obviously need. I’m tired of my son always being written off by people as if he isn’t as deserving because he is so severe that they feel there is no point because they say he will just end up in an institution anyways and then hearing people say things like the severe get a bunch of services when really they don’t get anything they beneficial and yet they need more than most. (I do not consider a glorified babysitter at school as a beneficial service regarding my son’s severe autism, it is nothing more than a safety issue for them that they needed to accommodate for safety reason, it has nothing to do with helping his condition or improving his learning) My son needs a new one on one every hour or so because he burns them out and they quit on him, so he has 4 different one on ones per day, but not all at once, but that is all he gets for so called services, he doesn’t get to learn like the other kids, he doesn’t even get to be in the class, he is literally excluded from life for the rest of his life! compared to anyone higher functioning than him.

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    • Hi, if you read further into my blog you would see my own son is very similar. He has been at school five years and his skills are no batter than they were when he started. He is completely non verbal, violent, respite are no longer prepared to have him and so on. I do get that end too but I can assure you everyone in the spectrum really struggles just in different ways.

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  11. As far as invisible goes the most severe are the most invisible as well, because they can’t be taken out in public or other peoples houses or anywhere. I’m not talking about the ones who claim their child is severe just because they can’t talk or something, but yet they have other ways to communicate, I’m talking about the actually severe the ones that most don’t even know exist and may never know exist because they are rarely out of their home, if ever and no one wants to visit because of your child’s extreme behaviors and their fear of being spit on or attacked. Most people even if they think they have met the most severe cases, really haven’t and will never know the difference not just because they are rarely in public in most cases but also because they end up in institutions later, not special care homes or special needs group home for the moderate, not in assisted living or on their own like the higher functioning, but in institutions where no one even knows they exist. Now that is invisible! I’m sorry your business is not really mine but you put it out there and I’m having a bad depressing day and couldn’t stop myself from responding.

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  13. It is always hard when you are caught between two worlds, and forgotten in the middle. I think this is also something that happens with girls a lot more, due to the ability to mask many of the challenges.

    As a young girl I went under the radar and went through school without support, and then onto university and school. People may say that I have coped and succeeded however I regularly missed classes at school and avoided lectures at university as I preferred to learn by myself at home away from the classroom. I also routinely saw counsellors & therapists from the age of 13 at school, at university, and throughout my working life. The reality is that my ability “to cope” came at a price.

    After being diagnosed last year as autistic, I do wonder different things might have been if I had been diagnosed and offered support earlier on.

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  14. I have NF1 and mild Autism and I hate those liberal SJWs who got rid of special education schools that could help the blog author’s children and myself. The reason to get rid of these schools and their much needed services was for “equality” and “dignity” reasons. Both parties lobbied congress and more so state senates during the late 90’s and early 2000’s for these gradual special education school closures. Let us not forget greedy and cheap conservatives that started this dangerous trend of closing special schools for budgetary reasons slightly before the liberals.
    I was mainstreamed barely graduated high school and I am now a unemployed “loser” in his mid 20’s and now in college part time. I cannot afford with $750 per month SSDI to live on his own but am not severe enough for group homes nor one on one helps offered to more severe autistic persons. It was not the Developmental services that paid for my speech and physical therapy nor the social skills groups that I attended within the last 5 years but Medicare insurance I received through sheer luck of a deceased father who did not receive this benefit before his death. The federal government paid for these helpful therapies. Not the “benevolent” local government that runs autism service offices! I live in California these Developmental Disability service offices are called “Regional Centers”. Sorry for the long ramble but I had a similar story.

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  15. Hi. I just want to thankyou for this. I’m an autistic adult and also have a sister with severe learning difficulties and cerebral palsy. I’ve often been denied services that I need because I was considered too high functioning including for severe anxiety. My sister will never look after herself including for intimate care but at least when she had depression a few years ago she was unable to slit her wrists

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  16. My story is almost the same, my husband is like yours, my son is almost like yours and my daughter, is exacly like yours. Al terapis she have i pay to my pocket, she was sofer bullyng at scool, she haven’t any friend, its very dificult. I’m sorry for my inglish, its not very good.

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  17. Thanks for writing this, especially this part:

    ” 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. ,,

    I am 100% sure (and so are most psychiatrist that have seen me as well as some of my friends and relatives) that I have Asperger’s, but I am 21 and I am still struggling for a concluding diagnosis. I have gone all my life trying to act like a normal people, even when the psychologists did tests to me, I thought “what would a normal person answer” instead of answering what I really thought. I have always had problems to communicate to other people, this leading to bullying during all my school life (not only from classmates but also some teachers and even my brother). I wasn’t able to ride a bike until I was 13 and even now it is really difficult for me. I have never been able to catch a ball, and everybody always laughed at me for this. I still can’t make eye contact, not even with my parents, and I can’t describe why I feel so unconfortable with it.

    But, in the other hand, I have been academically succesful, and I have studied many things on my own, read a lot of psychology books trying to understand how people act, and trying to be like them, and that’s why official tests are not concluding although all professionals personally detect my autistic traits on the first meeting.

    This means, I have had enormous difficulties through all my life, I even invented my own planet and society and convinced myself that I am not human because I have never been able to fit among them, but I have never had any kind of social help. I had to drop college because I can’t pay for it, I have been all my life in a mainstream school begging for change, but they never believed me. I have been forced to live a “normal” life when it is impossible for me.

    I am proud that somebody talks about us the “not-enough-autistic people” who are lost in the middle of two groups. I, on my own, am part of an association in my country that helps spreading the word of people with mental illness that are not understood by the majority of the society. I am doing my part, and I want to thank you for doing yours.

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  18. Thanks for your article, my toddler was just diagnosed with autism . Sadly being misunderstood is really a big reality for them.

    He just started verbalizing 1-2 words. But he is not yet potty trained. He barely has strength on his fingers to write.

    He doesn’t have social skills yet.

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  20. I dont think its a coincidence that many mid-spectrum types end up being home schooled – after all it costs nothing, so that’s not only going to save any additional SEN costs but also the base rate of funding per child per year. And they probably hope that with each child that leaves, SATS scores will rise 😠

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  21. You have just described my son who was exactly like this up until Christmas, at which point he stopped coping and just fell apart. The school didn’t see it coming despite my constant communication with them. But then what do I know. He has now been out of school since Feb and still hasn’t received any help for his anxiety connected with education. He is now going to get an EHCP and a special school but why are we waiting for these kids to fail before we get any help? A little intervention before would have supported him through secondary but now I have a son who may never be able to go back to school full time. The damage they have done is cruel! Thank you for writing this article which sadly highlights the ongoing struggles of so many!

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