There is nothing ‘high’ or ‘functioning’ about her autism at all.

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My daughter attends her local mainstream school. Her grades are average and her behaviour perfect. She is mostly happy to go to school and is never later with her homework. She appears to be an ideal student and school report ‘all is well’.

But all is far from well with my child!

She no longer receives occupation therapy, or speech therapy or any other support in school. Her grades are considered a reflection of the fact she is coping well and therefore her autism is deemed to be ‘high functioning’ simply by the fact she can answer simple times tables questions or write a story.

But there is nothing either ‘high’ or ‘functioning’ about her autism in any way!

The dictionary defines high as “great, or greater than normal, in quantity, size, or intensity.”
My daughter has high ANXIETY, high EMOTIONS, high SENSITIVITY but not high autism!

She struggles with noise, touch, change, lights, attention, demands placed on her, eating, drinking, toileting, self care, socialising and understanding the world. Just because she can read a book, sit quietly in a classroom and sing in assembly does not make her autism any less.

The dictionary defines ‘function’ as “the kind of action or activity proper to a person, thing, or institution; the purpose for which something is designed or exists; role.” Is it ‘proper activity’ for a person to break down in tears and make herself sick because the school has changed her gym day for a few weeks? Is it ‘proper activity’ for a child to be unable to interact at all with other children in the school playground? Is it ‘proper activity’ for a child to stop eating and drinking completely due to anxiety?

Her autism does not disappear when she is at school. All that happens is she conforms. She ‘follows along’ like a sheep in the hope that no-one notices. Inside she is breaking up, welling up and churning up but all anyone sees is a child who can write in a jotter, sit on a seat and tidy up when asked.

A child with autism in mainstream school should never be assumed to have ‘high functioning’ autism simply by the fact they are in a ‘normal’ school classroom. Just because they have the same uniform on as all the others does not mean they are the same.

Inside they are either feeling sick, shaking with anxiety or screaming. The flickering light is causing them pain, the humming of the radiators is making them want to cry and the child next to them leaning on their desk or touching their pencil case is causing them to want to run away. Can you see any of that or do you just see a child with a pencil in their hand writing?

School don’t see the pain in her eyes when I pick her up at three o’clock. They don’t see the teeth grinding, the skin picking and the disengagement. They don’t see the lining up of everything, the screaming and the cowering in a corner. They are not dealing with the sleepless nights begging me to come in bed beside her or the full on food refusal because her anxiety is making her ill.

They look at test scores, conformity, and academic skills and decide that my child at best has ‘high functioning autism’ or at worse is ‘fine.’

She is neither.

She has autism. Simple as that. She is every bit as autistic as her non verbal brother who has severe learning difficulties and attends a special needs school.

Don’t dismiss her struggles based solely on the school she attends.

School can say what they like but there is nothing ‘high’ or ‘functioning’ about her autism at all.

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53 thoughts on “There is nothing ‘high’ or ‘functioning’ about her autism at all.

    • As a teacher, thank you for writing this – in defence of my profession we receive very little training on any SEN – 1 3 hour lecture at college was assumed to cover it all! We rely on parents advising what their individual child needs, or doing our own research for our own classrooms – all of which is a drop in the ocean if it is not carried out across the school – it’s no good being an autism friendly classroom if every time you venture into the hall for assembly all your hard work is undone by a loud sound system, bright visuals and lots of hustle and bustle. We need local authority and SLT teams to prioritise our training needs and that comes from parent pressure. Keep pressuring as I can assure you a lot of class teachers will be very grateful. I don’t want an INSET day about how to achieve higher SAT’s scores, I want to know how to keep EVERY child in my class safe, happy and engaged, I don’t care about the latest government spin (Every child matters, SMCS etc) I care about how create an environment that enables EVERY child to enjoy school, to want to come each day and to feel valued for being who they are.

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  1. This used to really annoy me when I worked for an autism outreach service. The number of conforming and passive autistic children in mainstream schools who were deemed to be coping ‘fine’ was shocking. I always used to really feel for the type of child like your daughter. Just because they are not displaying challenging behaviour, doesn’t mean their autism doesn’t impact them during the school day. I had so many battles with schools who ‘didn’t see the point’ of using any strategies with children like your daughter. It was infuriating. I have been on countless home visits to parents who would tell me similar things that their child would do at home in order to cope with the stresses of the school day x

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  2. My daughter is 16. She has a dx of Aspergers, sensory Integration disorder, depression ,eating disorder and Body Dysmorphia. She is very “high functioning”. She got 4 GCSEs last year despite her anxiety affecting her school attendance. She has spent years trying to fit in and conform. Today she said to me that “she feels more autistic” than ever before. She cuts her school shirts so she just has the collar under her jumper. She can wear limited clothes. Because of her high functioning she has received no support. Things started to fall apart seriously in Year 9. She has developed MH issues. She hates school yet is so intelligent. There is no school that is a good fit as society expects that she should just fit in. Doing that has made her unwell.

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      • Your daughter sounds exactly like my nearly 17yr old daughter. She was impeccibly behaved at school but they didn’t see the upset we dealt with daily to get her there, or how upset she would be coming home because someone had borrowed a pencil or used her ruler or kept tapping their pen on the desk. School didn’t see how exhausted she was at the end of the day, getting in her pjs and going to bed to rest. These amazing kids learn how to conform in a society that wouldn’t otherwise accept their special quirks because they ‘look normal’ and manage ok. This constant display of conformity is exhausting in itself, I wish my daughter could just relax and be happy to be herself no matter who she’s with or where she is.

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  3. Yep my daughter was conforming at school until she had a breakdown, has mixed anxiety and recently diagnosed with ASD and because she looks normal it’s took us a long time to get the help she needs. She’s 15 and been out of school for nearly 2 years, now fighting for an EHCP so when she goes to college they will understand although she looks ok there’s so much going on inside my daughters mind and body. Thanks for sharing and keep sharing xx

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  4. These types of labels tell us nothing about a child sadly. My girl is intelligent (again, probably not a great label) but struggles to conform due to high anxiety, so does also not fit the high functioning idea. And I get what you’re saying – when the label is given it is generally wrongly assumed that less support is needed 😔

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  5. This is so well written, you’ve explained it all perfectly. Both my autistic children ‘survived’ primary school despite their difficulties. Secondary school has proved common more difficult and my eldest did not make it, he was in a special school by year 9. The younger one is doing ok so far on year 7, I can’t say she’s doing well, just ok, and she’s getting lots of help. The high functioning label is so wrong and it’s why I’ve had to fight so hard to get my eldest his disability benefits. I told them all his difficulties but all they could see was his high functioning label.

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  6. A very interesting article which is certainly an eye opener but nowhere in your article do you give suggestions as to improve an autistic child’s environment in and around school. As a mother of an autistic child I’m sure you would be the best person to write an article that would give advice to teachers about how to help autistic children within the class. I’m sure such an article would be more helpful than any teacher training class in a university. Thankyou for sharing xx

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  7. Do you have an EHCP? Only asking because I’m in the process of getting one now for my daughter and what they look at are all the things that prevent her from being able to concentrate on her work. The adjustments needed, awareness required and strategies to help with her difficulties are set in stone for every teacher to see. Very important when you go up to secondary school and there are lots of teachers. You also get to name your school. The school has to take her. Takes all the stress out of that! If you don’t have one, your first stop should be I.P.S.E.A. Book a call.
    The school tried to fob me off with the ‘she’s doing fine!’ thing but in the end, the senco was instrumental in getting the OT into the school as I pointed out that ‘fine’ was not her full potential.
    Keep fighting.

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  8. Reblogged this on School Refusal Families and commented:
    So many families have children that are considered ‘fine’ once they are in school but if the school had a better awareness of the struggles the child and family have in relation to attending school they may realise ‘fine’ is not the correct term to use. Many families with school anxious 0r school refusing children suspect their child could be on the Autism Spectrum or they have a diagnosis already but do not not have adequate support in school.

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  9. After reading this I am glad my son lashes out at school. At least they can see that just because he is in the top classes he still needs the extra help. Your poor girl is left to suffer inside. Hugs to you and her.

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  10. Thanks so much for sharing your story. When our children slip under the radar because of their behaviour not standing out , it’s really hard for our children when they are in school with all of their own individual challenges, each and every day. Also for us parents, who don’t always have the right answers or the right opportunity to be able to speak to the teachers, when problems arise for our children. I know there’s lots of different reasons why some teachers may not be able to spot somethings a challenge at a specific time, or simply there’s not enough teachers who specialise in helping our children, but this still does not help our children to reach their individual goals in school, to leave school with a good education , and a good awareness of the world around them……If all the school can see, or just sees, our children as “doing fine”, when simply they are not.

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  11. My son is now in a special school despite being ‘high functioning’ as we fought for his difficulties to be recognised despite him being academically far more able than others in his special school. Being in a place where his anxiety is understood and catered for has made a world of difference to him (and therefore the whole family). Him being calm, happy and having raised self esteem has been the best decision we ever made. School are now working with us to find ways to meet his academic needs whilst keeping anxiety to a minimum. It’s still amazing how often people say to us ‘he’s not very autistic, is he!’ Because he’s verbal people see no difficulty.

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  12. I have similar problems with my son. His teacher dismisses his autism. Saying he is smart so he is capable of all tasks given to him. She told me that he manage to do something before so he can manage to do it again. I explained that he is not coping and comes home often from school and self harms because of the stress. This she seemed to find funny. So of course this is where I got angry . School need ‘re training to be aware of autistic childrens needs and the different spectrums. We cannot get our children statemented when they are classed as high functioning so need to attend mainstream. The teaching system need to then comply to their needs

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  13. Thank you so much for sharing this blog. I feel exactly about our son. We requested an EHC assessment and were refused because his assessments were out of date. I didn’t know autism, expressive language disorder, global developmental delay, emotional, social, health difficulties child has a best before date stamped on them. Inclusive education ( I work in two secondary schools and 20 years in education) means conformity to the norms and values of the institution. It has nothing to do with equity and difference.

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  14. Totally sympathise with you. School never recognise children who aren’t coping with anxiety. My son has high functioning autism & severe anxiety & was out of school completely for a whole term due to anxiety. Before he got to this level the Senco felt he was fine & was happy to do away with his statement. They never see what happens at home, exactly as you say – the sleepless nights, the crying, the massive stress they are under every day. It’s very frustrating when these people are supposed to be the ones who understand special needs – if the Senco & TA’s don’t fer it then how will our children ever be supported properly? X

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  15. Thank you for sharing your daughters story as well as the story of many undiagnosed autism spectrum girls and women. It is my story as well. Now, at sixty years of age and with the recent loss of my dear husband who kept me grounded and who handled many of the issues I had difficulty with, I feel lost. I only discovered I fit on the autism spectrum when I self tested after the professional evaluation and diagnosis of my adult daughter. I learned so much when she was diagnosed and I finally gained a bit of an understanding of why I am the way I am as well. The sensory overload, the feelings of being overwhelmed and not quite fitting in even though I was one of the brightest in my class. The inability to transition from the life of a student and child to a functioning adult led to so much doubt and feelings of inadequacy. When I did ask a psychiatrist for her opinion I was told I couldn’t possibly be on the spectrum because I could make eye contact and had a bit of a sense of humor. I truly was disappointed that she couldn’t see beyond appearances and open her mind just a bit. To be fair, it was a one time meeting with the particular psychiatrist as a part of my disability case.

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  16. I relate to this completely! My daughter ‘conformed’ to a degree,she wasn’t diagnosed as being on the autistic spectrum until she was 14 and only then because she had been kicked out of a mainstream school and her new school recognised it,by then she was already trying to control her emotional problems with drugs and alcohol,things could have been so different for her,she had 6 weeks signed off school due to anxiety before anyone took her emotional state seriously

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  17. Public School systems administrator’s dont care. The director of special eds job is to make sure your child receives the least amount of services as possible as they can get away with. Its horrible! My advice if you have the money is to send her to a private school which will help her grow and mature. Small classrooms. Please dont waste your money hiring lawyers like I did. The public school system is run by expensive lawyers from the teachers union, you will never win. Use your money at a school that is qualified to help you daughter.

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  18. I’ve just been told that my 10yr old daughter is not autistic although the powers that be admit that she does have autistic traits. She recently scored ‘high’ verbally but way below average in verbally. You have described my daughter in your blog. She confirms at school and imitates behaviour. She has huge meltdowns at home, has a constant tummy ache, has lots of sensory issues and I can tick lots of boxes when looking at autism in girls. I’m not sure where I go next but I will be using your blog as back up, thank you x

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  19. You have a gift in expressive writing, thank you for using it to share your journey with us. I will pray for your family if that is ok, if not then I will just send you best wishes!

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  20. You’ve put into words very eloquently my fears for when my verbal, social and intelligent live wire of a daughter with an ASD diagnosis leaves nursery and starts school. She can communicate and is bright therefore her autism is hidden, silent and misunderstood by the staff she is with. I feel defeated by the educational system before it’s even properly started 😢

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  21. This hit home. Thank you for writing what I have been feeling since my son started elementary school. He was in a special education preschool for two years and has high function autism. They were wonderful. His school sees what your daughter’s school does. He does receive a social type class with a few other students a couple days agree, but it’s not enough. My baby boy comes home from school everyday, and lets out all the pent up anxiety, frustration, and every other emotion out. It’s nice to know we are not alone. In my post yesterday, I briefly touched on how everything looks “normal” on the outside, but inside they’re screaming. Hang in there momma. ❤️

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  22. It’s awful but I am so glad to read about another child who I so similar to my daughter, I have spent a year saying exactly this and feeling like I’m going mad myself! X

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