I am sorry. I am a good human being – a good teacher, I think. I listen, I learn, I strive to be better. I know it is a great responsibility to shape young minds, young opinions. I thought I knew what it means to teach a pupil with autism. But experience has given me something knowledge never could and I am sorry; now I begin to understand.
Before I was the mother to my son – my son who I now know is autistic – I thought you might struggle to imagine as vividly as others. I see now that isn’t so; your minds can be quick and bright and colourful – like exotic birds, beautiful but unusual. Sometimes you just struggle to imagine things that are governed by the expectations, the minds, of others.
Before, I knew that some of you might find relationships difficult. I thought your emotions ran differently to mine. I feel the warmth of my son’s arms around me and I know that isn’t true. You feel love just the same, just as deeply – you just struggle to express it in the ways others think you should.
I knew that people were wrong to put any behaviour down to poor parenting, poor control. But I did not know what it means to be so overwhelmed by the chaotic world around you that you cease to be able to function in it –
I turn the hand-dryer on without thinking – wild eyes, racing heart, minutes spent holding my baby boy, whispering reassurance, waiting for him to calm. That stark revelation is my new understanding.
– I am forced to wonder, how painful might the noise, the bustle, the fluorescent lights of the classroom, be for you?
I knew you might be constrained by the literal, confused in a world where the rules of language seem to be made, only to be broken. I watch my son’s face crumple with distress when I tell him he will have to ‘stay on the stairs forever’ if he doesn’t come quickly and I understand how utterly unfair it is that the complex nuances of language come easily to others.
I knew that you could thrive on routine and small changes might provoke big reactions. But I did not understand the true feelings behind those responses. The unexpected can be frightening – we can all appreciate that –
My son stares at the parking spaces on his play table from the opposite side. He knows his numbers well. They are always the same. But today, the 6 has become a 9, because, from his view, it is upside down.
He screams.
“Mummy! Mummy please help. Make it change! It has to go back, it has to go back! It’s wrong. Please, please mummy help!”
I run. There is the moment of dead panic. I think he must have hurt himself – something must be badly wrong. But no – after a few minutes of watching him try to show me, wailing, I finally understand. “It has to be near the 10”, he sobs, “Please make it near the 10!”
I take him to the other side, where the numbers are correct, proper, where they always should be. He calms.
– I am sorry. I did not know the terror that the unexpected could bring. For some of you, the small things can be big. An unexpected object, an unexpected route, finding a 9 where a 6 should be – these can be as terrifying as finding a lion in your living room.
I am sorry that I did not fully understand all of this – when a girl begged to leave the class, when I saw a pupil screaming at another member of staff, when I made you wear your school jumper because those were the rules and we all have to abide by them.
But more, more than I am sorry for my lack of understanding, I am sorry for not fully realising: it is not the differences that sometimes divide us that define you, but the similarities that unite us all. We are human beings with human hearts. We are anxious and afraid and we fear, we love, we cry, inside or out. All of us. I love my son like a billion mothers love a billion sons, everywhere – like your mothers love you.
I am grateful that I now understand. Not just so that I may be a better teacher for you all, but so that I may be a better teacher, a better human being for everyone I know, teach, love. Who knows what silent battles others fight? Who knows which actions are provoked by fear or doubt or desperation?
We are all different, not less- the thousands of sons and daughters that have filled my classrooms, girls and boys, black and white, autistic and neurotypical. And my mother’s heart makes this promise to all your mothers’ hearts, and to you: I will try to understand. I will try to be better, I will try to treat you all, every pupil, as different, not less.
*I believe that the autism training given in schools is simply inadequate. As a teacher, I have received autism training, from many different schools, every single year since I qualified, thirteen years ago. It has not been successful in helping me to understand the needs of autistic pupils. I would like to share this post with parents, teachers and those in positions of authority within education, so that we might spread the word and improve the situation together.
The autism training I have received has been focused firmly on ‘managing’ the perceived ‘symptoms’ of autism. I have gained little or no understanding of the issues and feelings that might motivate challenging behaviour from autistic pupils. In thirteen years, no one has explained to me what a sensory meltdown actually feels like, or even what might be happening if an autistic pupil displays behaviour consistent with sensory overload. It is only now that I realise just how woefully unprepared I have been. It is not good enough and as parents, educators – human beings – we cannot let it stand.*
I am linking with:
I am a 51 year old autistic woman and I like your post. Walking into waters of better understanding and growth. Your son will have I should think, a much better life than I did. At 51 I have accomplished much, learned, grown, studied, and am still working on healing and growth.
I live on my own, even drive, long ago was married and had a six figure job. It took me walking my own path, fonding my own way to heal from a lifetime of trauma because I was “The Retard” as my Dad called me. You see in 1969 Autism wasn’t something anyone had heard of, so I was diagnosed as mentally retarded. I got abuse, not support. But I kept on. I have been living alone, in my own home, dealing with my own life now for almost 8 years. It’s great.
I’ve come a long way. That said, eye contact still hurts unless I’m really close to someone. I’m still frightfully literal, I still live an autistic life. But knowledge is power. The picture of the upside down parking spots still hurts my head, but I don’t have a meltdown over it. Meltdown I’ve learned better how to avoid, and often how to stop one once it has started. I am much better in so many ways than when I was a wee lass and I’m still growing.
That said, i can’t figure out what “stuck on the stairs forever” and not having amy success figuring it out from context. Is that an idiomatic expression? If so, could you let me know what that means? Even my NT girlfriend isn’t certain what it means…
That said, this is a wonderful post and I much appreciate it. Thank you., Sami
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Thank you for commenting. I am so glad you have come so far. You sound like a remarkable woman. The reference to staying on the stairs forever was this: My son was going very slowly on the stairs and even stopped. I just, jokingly “Come on sweetheart we’ll be on the stairs forever.” He took me literally and thought I was telling him that he would have to stay on the stairs forever. It took a long time to calm him and convince him I didn’t really mean it. Thanks so much for commenting. I wish you well. x
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That’s what I thought (staring on the stairs forever) too when I read it, thus trying to find out what you meant. Thank you for replying, you are a good Mom, your son is a lucky boy!
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It also dawns on me, that many of us have motor control issues that are tied up in with processing delays. Stairs are almost always something I am very careful with, even to the point of veing very slow on stairs. I can walk, and cycle long distances, and have strong legs, but running and stairs are still a huge challenge for me. Between motor control, and proprioception I’m very careful and often have trouble. Despite knowing the stairs in my building well, if I am carrying too much or it is unweildy, not only is proprioception a challenge, but so too is balance (vestibular sense) so while I can sit at the gym on the machine and move hundres of pounds easily, steps, stairs and such can be dangerous for me. So sometimes I am very, very, very slow with steps and stairs to keep from falljng up or down them. Some steps I have to put down what I’m carrying and step up, then pickup stuff again.
Sensory issues can be so much fun when one is autistic. He may not have the understanding or study yet to be able to explain it, so he may have already been feeling pressure when he took your words (as I often do) literally.
Thank you,
Sami
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People use words that greatly exaggerate a situation in an attempt at humor, as part of sarcasm, to make a point, draw attention to a particular idea, or make it seem more impressive than it is. I’ve noticed the word used to exaggerate is often spoken with more emphasis then the rest of the statement. Think of how a teenager sounds when they whine about being “stuck in class *forever*”, or when an adult says they “waited at the DMV *forever*”. The *forever* is said with more emphasis with a bit of even more emphasis on the second syllable. When someone is exaggerating, the word they use is exaggerated and indicates the exaggeration of the statement.
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Thanks for helping to explain!
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I am now a granny and semi retired and I am a trainer and early childhood trainer.
I have been wondering since my grandson was preparing for big school about us starting a volunteer teachers aide community.to support teachers in their work.
Not sure that it would work ,but what a difference it could make.
Jen
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It sounds like a great idea. Thanks for commenting.
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Absolutely awsome!! What a brilliant letter. What you have written about is a strong passion of mine…to really understand the feelings, fears, rejection these kids feel beause they are so misunderstood from their perspective.
Another hope is to make accomodations in the cirriculum for children w Autism, esp whom are high functioning, but because of their neurological challenges in digesting mainstream school material, and the challenges they face to deliver their responses, in a particular time frame they are excluded and labelled intellectually disabled. Accomodations to these neurological challenges would see amazingly bright shining lights in these individuals. This journey I know well having walked with both my children on this path in the schooling system.
Through my children I have felt all of their trials and tribulations and to not attempt to make a change would go against everything I stand for, esp to be the voice for all the unheard children. I hope to link with like minded people to create change in the school curricullum and to approach training for school staff in the way you described.
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Thanks so much for your kind words. I hope you are able to spread awareness.
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Thanks for the great piece of writing, and the wonderful comments. Our high functioning son was not diagnosed as autistic until almost 16. He was assumed to be oppositional defiant, with reactive attachment disorder from bad foster care experiences before we adopted him and two siblings (they are actually my biological grandchildren). We could not understand his behaviour in any other context and were at our wits’ ends. Now, with occupational therapy and understanding of his strengths and weaknesses things are so very much better. He will be okay, will finish high school despite some rough years, will likely do post secondary education. He is a nice kid. Thank G-d we finally did enough testing to find out!!!!
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As the Grandfather of an Autistic Child who struggles at school it is good to know that somewhere out there is a teacher who gets it. Yes it took an Autistic Child of your own but I agree with others. YOU will be a better teacher for your personal experiences.
Your letter made me cry as I saw shades of my grandson in it. I’ve been there for the upside down numbers, the routine broken, the terror at the wrong turn of phrase used. I’ve held him during the screaming fits because the vacuum cleaner got turned on while he was here.
Thank you for sharing and giving others a brief glimpse into what for us is a normal day in the life.
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Thank you for commenting and your kind words 🙂
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I love this piece. I’m a counsellor, diagnostic radiographer, I teach for Scope and have a beautiful autistic son. I also had a stroke three years ago which left me with different sensory perception for a while. Just like you, I have never personally experienced autism, and each Autists experiences will be different from one another.
However the combination of experiences both personal and professional led me to devise the Autism Experience. I deliver this on behalf of the Northanptonshire based charity, High Five. It’s full of audience participation.. I use team activities that demonstrate a processing delay, interpersonal communication activities designed to make the participant feel socially uncomfortable. We do a sensory experience. All the way through we explore the participants emotional responses (which is where the counselling background comes in), discussing how they feel, situations they’ve felt like that in before and showing them their ‘autistic behaviours’. As you say in your article, it is the similarities that unite us all. We look at coping mechanisms used by people in the room, how that feeds into adaptions and accommodations.
Its been well received; amongst others we’ve presented to the scouting and guiding associations, a national holistic therapists forum (I wanted to reach people that ASD parents may turn to who have no ASD training whatsoever), our next sessions are for professionals and grandparents/extended family of ASD children.
It’s a lot of work, like you though I’m driven by the need to give people not just a cognitive description of autism/traits/ triad, but an emotional connection and understanding, which is producing some wonderful responses.
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Hi Rachael
I am a fairly recently diagnosed Aspie aged 50.
Your programme is something I would dearly like to find out more znout.
I am professionally qualified from N education background and ever since my diagnosis I’ve had a strong urge to find a way to raise awareness amongst professionals of all types.
I would love to exchange contact details to explore this if you’re interested.
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Rachael,
I am a recent graduate with a bachelor’s in psychology. I am currently learning more about different branches within psychology and exploring career options. I would love to learn more about your program, as I think it would expand my knowledge of how to educate people about what it is like to have a disorder or a disability. If you give me permission, I may also recommend that disability support services in my area host a similar type of program. I would really appreciate it if we could exchange contact details and discuss this further.
–Ellen
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I read this, and it immediately resonated with me. I am also a (ex) teacher who once did not understand some of the children in my classroom, but now I am beginning to. I also have a son who has autism. I wish I had known better at the time, there is so much in my practise that I would change now if I had the chance. I hope you don’t mind, but I am sharing your post on my own blog, with a post of my own. Thank you for writing, and good luck to you on your journey. x
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Every year I give each one of my son’s new teachers a pack of highlighters and and 8.5 x 11 sheet of paper color-coded, that states the 8 most important things they need to know about my son in order to teach him successfully. They may not take the time to read the present level section of his IEP. They always have time to read the eight most important things and they like the highlighters.
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This is beautiful…thank you! I wish all of my son’s teachers could read it! It resonated with me SO much, both as a mom and as someone on the spectrum myself.
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Beautiful and honest letter. Thanks for linking up to #justanotherlinky xx
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I’m 33, and I’m a licensed attorney. (Barrister, I think, is the equivalent in your country.) At age 28, I was also diagnosed as autistic. It explained so much for me – so many questions answered, so many instances explained where I was the one labeled as “weird” or “a freak” when in reality, my brain literally worked in different ways from those of the people calling me names.
I don’t want to brag, but I hold a demanding job that requires a lot of intellect. The reason I bring it up at all is because I was one of the extreme minority that had teachers who saw that I learned differently from most kids, and who helped guide me through hoops to do my own thing. I was in a good public school – lots of independent studies, lots of projects instead of reading texts with the rest of the class that I’d mastered years ago. I had teachers who challenged me (most of them) and who treated me like a person instead of “the weird kid in the back row.” My writing teachers in particular saw me and saw that the myth of the autistic dearth of empathy was just that, as it is in a large portion of us. They helped take my creativity, my talent for logic, my passion – and spark it all into a love of learning that will never be extinguished.
I read a lot of my teachers in what you’ve written here. Please keep spreading this post and the beliefs within it. It will make autistic lives better, and give so many more of us the chance to reach new heights, where oftentimes, it’s teachers and school systems who help keep us chained in the basement.
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I’m an Autistic mother of an Autistic 5 year old. While I tend to be better equipped to handle him thanks to first hand experience, his own, unique experiences and perceptions of the world have further opened my own eyes. Some things were things that I didn’t realize at all, before (like just how loud public toilets are when they flush), while others are things that I notice and that do bother me, but I’ve learned over the years to dismiss as “just me.”
The latter, we learned the hard way a couple of years ago, when we moved and put him in a new daycare. The multitude of bright colors, combined with the constant transitioning and having 20 kids in the class, simply overwhelmed him, and we had nothing but problems (and worse, the center blamed us for his behavior; behavior that he never exhibited in any other setting). I wasn’t keen on all of the colors when we first toured the center, but I just thought all early learning centers were colorful and busy (even thinking back to my own time in kindergarten, that’s the impression I still have of it, though the underlying paint was more neutral) and that kids liked that better and my aversion was because I was an adult.
Now, he’s going to be going into kindergarten, himself, in the next school year. We just toured the two schools available to him, and I learned from that past experience. I noticed the busyness of some of the rooms and can better anticipate how he’ll deal with such classrooms, with his auditory sensitivity and the ease with which he’s overwhelmed by visual inputs.
You mention that no one has explained to you what a meltdown feels like. Allow me to change that for you. I wrote about my experience the last time I had a major meltdown. Hopefully it will be of use to you — https://medium.com/@gordondev/anatomy-of-a-meltdown-84e501478292#.yinplfxyp
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Thank you so much for your comment and link. I will take a look. Always hoping to widen my understanding. My son will start school next year so I will beed to bear such things in mind when choosing too. x
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Thank you for this wonderful post! May I have your permission to share?
I firmly believe we do not know what we do not know. But, once we know better, we must do better! I can relate so closely to this as a therapist for individuals on the spectrum for 20 years. I’ve learned things in the past 4 years that has caused me to #rethinkautism and so much has changed! Please consider attending and/or sharing about the upcoming 2016 Rethinking Autism Conference on April 1-2. Visit autism.optimalrhythms.org for more information or contact me at casey@optimalrhythms.org.
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Beautiful post.
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Great post; wish you could email it directly to all teachers and make them stop and think. Well, maybe just those ones who don’t already 😉 There is so much to think about, and so many different ways we can approach and embrace these differences. Classrooms and playgrounds are difficult places but can be made much better x
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Thanks for this great post. As a grandparent of an autistic 7-year old and as an ex-teacher (retired) I can really relate to it. I’m reblogging on my site because I think it deserves as much publicity as possible. So many teachers, even the best-intentioned and sympathetic ones, get so little information.
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Thank you and thanks so much for sharing. 🙂
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Reblogged this on Nature in the City and commented:
reblogging from “Someone’s Mum”
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As a nurse, I avoided anything to do with learning disabilities or autism because I really didn’t get it, nor did I want to – so I gave birth to a daughter who was diagnosed as ASD when she was 9!! That was more than 2 years ago and I can honestly say that my life is a much richer with her in it. But it was a very steep learning curve, which I am still on as we enter the minefield of puberty :). It is impossible to understand ASD without living it and it is great if we can then take this wonderful, challenging and frustrating parental experience and use it in our work lives to spread understanding as far as possible. I am no longer a nurse but I am able to use this experience whilst supporting young people in the cafe I now manage and I hope that my other 2 daughters will grow as better, more rounded people as a result of growing up with their sister. I loved your article and have tried very hard to share my experiences with my daughter’s teachers – some are more receptive than others ;). Thank you for sharing your experiences and I hope that you are able to share your knowledge.
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My son is autistic, he hasnt struggled per se with mainstream UK schooling, in fact they were great throughout the diagnosis process. However, the system is just not set up to consider the ongoing needs. I was lucky enough to move jobs to Sweden, with my family moving too, and this week we had a great revelation at his parents meeting. His teacher could see he needed support in focussing on certain tasks, so a routine plan was put in place, he has time and space to leave the classroom if it is too noisy so that he can concentrate, plus a myriad of other little things they have altered just for him, because they help him. The amazing thing is that we as his parents havent asked for this, it was just put in place, irrespective of the minute extra time or cost. The difference in attitude between the two schooling systems is so far apart.
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oh gosh, don’t tempt me, I fancy a move to Sweden now 🙂 Actually we have been very lucky with a primary school which does that here in the UK but I’m not feeling so confident about secondary level…
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Dear Someone’s Mum…Thank you for your touchingly frank letter, some wonderful lines and comments have followed too.
I feel for your realisations and are so thankful that you will, I believe, begin to champion change within schools….you are right, focus is on control, on dealing with behavioural issues resulting from children and young people’s ‘meltdowns’ anxiety, overload within school and rarely on avoidance and prevention or understanding . .. we are not required, encouraged or trained to look further, to see the whole picture. .. how can we control if we don’t or can’t understand. I find myself constantly challenging this. Having been touched first hand with children and young people deeply affected by Autism, anxiety and Aspergers I understand the difficulties faced.. this in part led me in my late 40’s to make a huge career change a couple of years ago to focus on this area, to qualify as a teaching assistant, and also a mentor in school to help children overcome the barriers they face.
I’m continuing to learn. Currently doing a degree in special education, disabilities and inclusive practice. I want to be equipped and able to understand the complexities of SEN, Sensory and Physical disabilities, through first hand experiences, study, work place an voluntary work. Am striving to be in a position to be qualified and experienced enough to make changes, implement the right support, encourage deeper understanding and knowledge within and outside education. To offer real tangible support to students, parents and staff on all levels. To change perception and redirect the passion teachers and support staff have so that every child can be understood and flourish in their care.
So many changes are taking place within education and society but we must never stop growing and improving, we must never stop challenging and educating not only ourselves but those around us and the system when it fails. As teachers, parents, carers, support staff, care staff, students we can all make a difference, we can push for change, however small that change may seem… we know that to someone, to many, that little change, that difference can be huge and even life changing…
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Thank you for taking the time to comment and for your kind words. It sounds like you will be a great champion for autistic pupils and all who face challenges and need understanding. Hopefully we can make a difference. x
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What an amazing post! I spent many years as a Behavioral Consultant working to help educate teachers, support workers and family members to understand autism and how to interpret and respond to behaviour. Recently, I have made the switch to supporting employers and high functioning adults on the spectrum in their employment.
I would love to add this article to my ‘bag of tools’, can I post the link on my website?
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Of course you can! Happy if it helps spread even a little awareness. Thanks for your kind words.
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