An apology to my autistic students…

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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.

 

Upside down parking spaces

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.

**

To learn more about our experiences with autism, you might like the post ‘Autism? more like bad parenting.’





*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 autistic students display 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.*

An apology to my autistic students - from an autism mum

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142 thoughts on “An apology to my autistic students…

  1. As a teacher myself and a mum of an Autistic son I agree with all of what you have written. We expect children to bend to fit our system rather than the system changing to fit our children. Often it is just a bit of kindness or compassion that makes the difference. But we do need better training I agree. Another fab post!

    1. I could not agree more. As a self-advocate for persons with learning challenges and autism, I know what much of this feels like and I am learning more and more about myself which has enhanced my ability to help others. I am also an author of a self-help book entitled, “Be Unique, Be You and Live!” For more information about my book, story and mission, you can click onto http://www.beyouandlive.com. That is a great, warm and inspiring narrative from an obviously highly enlightened and inspired mother! Kudos to you! I wish you all of the best.

      Warm Regards,

      David A. George

    2. My son is 28. We live together in De. We moved here because they said they have a good program for autistic adults. I’m 67 and alone with my son. Just today we received word we were excepted. I cried all day. I have a little hope today. Please wish us well. He’s my whole life. I left family and friends behind because I have lost all hope.

      1. Please do not despair. Are you in contact with the NAS? They will help you find local support. What area are you in? I do wish you and your son well. 😚

      2. I am so sorry to hear you have not had support in the past. I hope the program helps you and wish you well. I don’t know what else to say – I am in the uk and have little experience as my boy is only three. I wish you both well. xxx

  2. I can not even begin to imagine what it’s like being an autistic person, teacher, or even a parent but if you who has been teaching for that long feel it’s inadequate then it is and much more should be done.

  3. This is an excellent post and so beautifully written. With my teacher hat on – I think we all think we ‘know’ a lot about things we in fact don’t. I hear so many sweeping statements – too often kids are shoved into categories, be it autism, dyslexia, ADHD etc. without any appreciation of the nuances. No kid is the same as another and I think empathy training would not be misplaced!

    1. I completely agree. I thought I was a very empathetic and fairly knowledgeable teacher and I now realise I was doing this ‘grouping’ without even realising. Thanks for commenting.

  4. I’m crying. In public. This has broken my heart. It scares me so much to think of leaving my son with people who ‘think’ they understand autism, but really understand how they have been trained to ‘deal’ with autistic children. I can only hope my son one day finds a teacher with as deep an understanding as you.

  5. Ok. I agree teachers training is not enough. I teach adults in higher education and we have NO autism training at all.

    I really appreciate your honesty too.

    What’s really interesting is your experience of autism with your son has made you aware of how little you knew before and I think it is fantastic that you now want to be better.

    What’s got to be remembered is you now have deep personal experience of JUST ONE child with autism. It’s fantastic that you will be able to use this experience to think out the box for other kids with autism.. or ADHD.. or SPD.

    Maybe it’s not so much about your insight into autism as your insight into how limiting your (our) own perceptions and assumptions are?

    Like some have said already, all kids are different, it’s just not always easy to treat them as individuals in our current system. Your beautifully crafted realisation will only help make this easier.

    My boys and their ‘autisms’: http://rainbowsaretoobeautiful.blogspot.com/2015/11/comments-from-steve-silberman-on.html

    1. Thank you. I was very careful to craft my piece to make it clear that I knew some of the things would only apply to some students with autism. That is why I open it up to all my students at the end. The whole point was that it made me realise how I was stereotyping and that it has given me an insight into appreciating the uniqueness of all pupils, not just those who are autistic. Thanks for commenting 🙂

  6. Your honesty is commendable and I want to thank you for writing this post…
    I am lucky in that my son’s teachers have all been placed on courses or put themselves on them in order to understand his individual needs. We’re all human and we all get it wrong – even us as parents who are the experts when it comes to our children. I know that his teachers know a lot more about autism because of him but each experience is different because each child is different. Beautifully written. X

  7. Honest,yes.
    It’s absolutely heartbreaking. My child was removed from education 5 years ago,failed by the system and its teachers by the time he was 7. Teachers that thought they knew better then his statement of SEN,teachers who thought they knew better than the Specialit teachers for autism,teachers that thought they knew better than his mother. Shouting at him and demanding eye contact, punishing him for being resistant to change, deciding he was just being fussy when he couldn’t eat or silly when the smells of the school lunch made him cry. I have often wanted those teachers,that caused us so much heartache as a family and so much unnecessary distress to a little boy because they thought they knew better, to be touched by autism and feel the gravity of their actions and to reflect on them.
    Perhaps one day they will too.

    1. I like to think there was no way I would ever have been that bad. I am a good person and I like to think I have always treated any pupil compassionately. But I could have done better. And I know colleagues who might behave this way. It’s absolutely heartbreaking and I am so sorry my profession failed you and your child. Thanks for commenting. I wish you and your son well for the future. xxx

      1. Home education has been and continues to be wonderful.My son has thrived and has exceeded all expectations both socially and emotionally.Sadly there are many teachers that think they know about autism,they are far worse than those that simply don’t know or understand autism. It is heartbreaking that I lost all faith in the system. When he was diagnosed at 3 I thought he needed to be in a mainstream school,by 5 I realised he needed to be in an autism provision and at 12 I know the only education he needs is not one that will be learned in a classroom with people who do not have a personal vested interest in his future.I fight everyday to to teach him enough so that he will be as independent as possible in his adult life,I fight to reduce his vulnerability in society and I fight to educate those in society about autism,what it is and what it is not.
        Everything changes when it touches your world,nothing is ever the same again. Xxxx

    2. Wow! I feel like I wrote this.. I too used
      to think that someday one of those teachers that mistreated my daughter will someday be touched by autism personally. Only then would they realize their pain they inflicted on my daughter and heartbreak they caused us as parents. I pray for them and pray for other children that are now still being abused throughout their school day. PEACE!

  8. What a great post. You are so right, the training teachers and assistants receive is inadequate, especially in main stream schools. I work in a school for special needs, and we have training but I have learnt most of what I know from the other staff and the children. We have a policy Getting It Right For Every Child, which I think every school should have. I’m glad you ave written this post and I hope it gets the message out there to more people.
    Thank you,
    Amanda. #kcacols

  9. Thank you for your post. I agree with it. I am a primary teacher, and I really don’t think I’ve had any training specific to autism.
    I had a little boy in my class with Asperger’s and I don’t think I did enough for him.
    I now have a son of my own with asd, and I see from both sides. I think having that understanding makes you a better teacher.

  10. This is such a powerful piece and so beautifully written. More training is needed, unfortunately I don’t see it happening anytime soon.

  11. I have a son who I now home educate due to the lack of understanding school provided. They unknowingly put him through hell every day tried to discipline him for twitching rocking shouting out answers impulsively, he was trying so hard and no one appreciated it. By no means was he naughty the adults in charge of his care where so sure they new what they were doing that they continued despite advice from mental health experts. I was sent on parenting courses but the training would be better given to teachers. I don’t believe the school system can accommodate our autistic children. It’s a rigid way of teaching that can’t make allowances or exceptions. I have a 5 year old with sensory issues around noise there is nothing we can do to make him more comfortable other than provide ear defenders in school. With my eldest son the all knowing head teacher monthly discredited my concerns by confirming to health professionals and outside agencies that she felt my son was fine. Since leaving school he has been diagnosed with ASD Tourettes anxiety and OCD. Why are uneducated teaching staff given such power over our children’s developmental concerns? Please advocate more training but also many teachers need to stop possessing the power to speak in regard to a child’s mental/neurological health as they are not medical professionals.

    1. I agree! I also home educate my autistic son. Despite diagnosis at 3 and statement in place before he started nursery he was failed by 2 school by the time he was 7. His needs were ignored by his teachers,his TA used for children who were behind in literacy. Lack of training,lack of interest and lack of understanding from teachers is appalling.If mainstream school are going to except children with autism they need to be trained they also need to stop seeing children with statements as cash cows for the schools SEN budget. I do not believe inclusion works at all and even the generic special schools are not equipped to teach children with Autism. Only when the writers child enters the school system she truly know how the parents of the children felt. I have been volunteering for PP for 5 years helping desperate parents.its very wrong

  12. What a lovely heartfelt post and what a wonderful teacher (and mother) you are with that understanding, albeit in the most unconventional of ways. I’m not going to say unfortunate as like you say it’s not the differences that divide us and besides, life would be boring if we were all the same.

  13. A post that pulls at the roots of my heart. Thank you for sharing.
    We have been approached by my daughter’s school who has pulled in the speech and language therapist to evaluate our daughter because they have a concern that her ability to listen & understand is not fully as it is supposed to be (that’s a generic as I can put it really). We’ve had one meeting and though I am glad they are jumping on things quickly – like putting her in a smaller group with some other children who maybe have something of the same from her class and another class, I am worried about our upcoming meeting this month to hear about her progress. We have noticed things at home, she does have sensory overload and a couple of other bits we have noticed, but I have mostly put it down to her being well…5… so when I was told there might be something going on with her… I’m a little worried I must admit.

    #justanotherlinky
    #KCACOLS

    1. Thanks so much for commenting. We are relatively new with all this too. Nursery raised concerns with our son last year and every specialist that has seen him has said it it clear he has autism. This surprised us a lot as usually such a diagnosis takes a long time. Thanks so much for commenting and good luck with your meeting. xxx

  14. Thank you for this. My children’s school kicked out my youngest son because he was too “disabled for them and therefore no longer in good standing at the school.” He is autistic. They read my blog and I am hoping that by rebloging they will open their closed off, incompetent minds and wake up. They won’t. They are too blinded by test scores to wake up. I am nowhere near done with them.

    It’s a beautiful piece.

  15. Great post. My son has ASD and can struggle at school. All of his teachers have approached the situation in a totally different way, and it’s clear some of them just don’t get it, but I suppose it’s not their fault because they haven’t had the proper training to really understand him. The kids are lucky to have you as a teacher!

  16. What a thought-provoking piece. I hope this does help teachers – and anyone in contact with children with autism – to look at their own actions. I think there is so much expected of teachers these days but without the right training, it’s no surprise many might struggle.

  17. Thank you for this post.

    In response to this part at the end:
    “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. ”

    Perhaps it would be helpful if autistic adults were involved rather more often in the training of teachers and other professionals who deal with autistic children. Autistic adults do know what sensory overload and meltdown feel like and can understand and explain the underlying reasons for challenging behaviours – but they are rarely part of the conversation.

  18. Really well written piece. I have no experience of autism in children myself, although I do have a grown up friend with aspergers – with her, if I didn’t know I wouldn’t have any idea that she had it as it’s obviously well managed with with other people and she knows how to cope with her anxieties and symptoms.

    Must be so hard for teachers to understand, recognise and cope with children who do have different ways of experiencing life, especially when there’s 30 of them all needing attention and teaching to a specific level.

  19. This has really stopped me in my tracks – thank you for your words. We have seen first hand the difference that an ‘understanding’ teacher and one who simply refuses to believe there is anything wrong with our (suspected & awaiting ‘diagnosis’) Asperger’s daughter is immense. It is the difference between plummeting self esteem, confusion, upset, turmoil and a safe, calm place where learning is possible. I would love every one of my daughter’s teachers to read Martian in the Playground by Clare Sainsbury – it is superb. We are blogging about the ASD ‘diagnosis’ journey with our daughter if you want to chat further: http://colouringoutsidethelines.org

    1. Thanksso much for commenting. I really hope that I can now be an ‘understanding’ teacher and that I can help my colleagues to have more of an insight too, for all our children. xx

  20. Wow this is so interesting and an eye opening post!! I didn’t have a clue that the training for autism in this country wasn’t inadequate. I feel so sorry for all these little kids that suffer from this and haven’t been understood properly!! And I also feel sorry for all the teachers like you that didn’t get the correct training and of course sorry for all those mums that have autistic kids and have to deal with these problems every day. Great post Danielle! Thanks lovely for sharing this at #KCACOLS. I would love to see you again on Sunday! 🙂 x

  21. This has really stopped me in my tracks – thank you for your words. We have seen first hand that the difference between an ‘understanding’ teacher and one who simply refuses to believe there is anything wrong with our (suspected & awaiting ‘diagnosis’) Asperger’s daughter is immense. It is the difference between plummeting self esteem, confusion, upset, turmoil and a safe, calm place where learning is possible.

  22. This is so well written, my experience to date has been very limited but it is worrying that the training provided is not adequate. I ams sure any parent would be happy to have you as the teacher to their child xx

  23. Thank you for sharing this post. It has really struck a chord with me and raised a really important issue. Here’s hoping for more support in schools for both the teachers and the students who need it.

  24. Thank you! My autistic daughter started high school last fall, and it was a total disaster. There were a handful of teachers who were flexible and understanding. However, the vast majority of the teachers and the administration didn’t even attempt to work with her. She was so fearful of one of the assistant principals that she’d have panic attacks just thinking that she might cross paths with him. It was very disappointing, because her elementary and middle school experiences were vastly different (in the same school district).
    We finally pulled her from the school and enrolled her in another district.
    I know that teachers have A LOT that they have to manage, and I know that the majority of them are doing the absolute best they can for their students, and I appreciate that you’ve put this out there so publicly.
    I wish you the best with your son!

  25. Such a fascinating post, thank you for sharing. As you know the timing of it was very apt after our disastrous school visit. Your conclusion about the amount of training (or type of training) you’ve received as a teacher makes it very clear where the problem is. The focus is on managing rather than empathising, understanding, and helping the child.
    I hope we’re at the beginning of a change, something has to be done, and the only way that will happen is pressure from the autism community. Living in a time where cuts across the board seems to be the norm, means it’s going to be even harder to achieve, but we must!

    1. Thank you. I am definitely going to make it my priority to change attitudes in my school and make sure I keep trying to raise awareness for our children. I hope you find a great place. Mine starts school in 2017 so the search for somewhere will start soon. xxx

  26. What a beautifully eloquent and eye opening post. I hope somehow it starts a dialogue to make some obviously desperately needed changes! #KCACOLS

  27. Beautiful snapshot and perspective shift! Thanks for sharing 😊.
    I found that within my daughter’s journey (we travel with a music project that focuses on similar concepts!) it was crucial to challenge beliefs and offer more information. Teachers were definitely not provided with enough insights~ although this is changing gradually ~ to fully understand and help students with ASD. School is truly overwhelming in terms of sensory overload and understanding all of the expectations correctly.

    I used to get notes (in a communication book I organized) that my daughter was giving her teacher headaches (literally!). What I found out was that it was all miscues. She would hear a teacher’s assistant tell another student to line up blocks in a play time exercise and then would line up at the door ~ then get in trouble! Then she would cry as it made no sense to her 😊

    So wonderful that you are sharing your experience from both sides ~

    http://youtu.be/FO46Wp-MTic

  28. Lovely and heartbreaking post. I can’t begin to imagine what it’s like… My best friend’s son in autistic and I worry about both of them. She’s based in the States and I’m here in England, so I can’t really offer much help but give moral support and make sure she’s always there when she needs a sounding board. #BloggerClubUK

  29. A completely heartbreaking post that needs to be shared and read by everyone. We really need to develop our understanding of autism and improve the support and training offered in schools. As someone who was once a teacher (until I became a stay at Mum) I can say that I have never received any training on any aspects of autism which now I think about it I realise is disgusting. Teachers are offered all the training in the world on how to help their pupils reach their target grades but it feels like their is very little training on how to support individual pupils with their emotional and learning needs. It is about time our government stopped seeing our pupils as grades and started seeing them as individuals. #bloggersclubuk

  30. Thank you so much for this article. We have a delightful grandson who has Aspergers and the more helpful articles like this we can read the better it is for our understanding and for his well being. Again…..just thank you.

  31. I’m the grandmother to the most amazing grandson who is autistic and also has misophonia. We have worked together to bend this world to give him the maximum experience of life, learning and loving. He is 18 now, he will graduate this year from high school with the help of a in house tutor, a virtual academy provided by our school district and friends You notice that I didn’t mention me or his parents. The reason I state that is because we are not in his league intellectually and serve as his whipping board when he has a meltdown. He knows that we are comfortable with him releasing until he can relax and let us know the issue that spurred it on. I now can tell immediately when he is struggling with the need to vacate the premises so others don’t see that he is losing control. We vacate together no matter the place. He does not believe that others should have to change their behavior, space or way of thinking because he has a problem. He says it is his problem not theirs and he has to master it. If you saw a meltdown in the earlier days you would wonder if ever he could control, but he has because we also changed his world to fit his needs. He now can socialize in certain arenas and he keeps pushing the limits to expand his world. He makes this world better. We have checked out colleges and we found one that has what they call an accessibility office, not a disability office. They have promised me that they will work with us to give him as broad a college experience as they can. I want desperately for that marvelous brain to be used for the good of this world, but my hands are tied without support of our school systems. It is people like you who know the agony these special people suffer trying to match up to a world that is ruthless in it’s demands for conformity. Thank you from a grateful grandmother.

    1. Thank you so much for taking the time to comment and for your kind words. It sounds like your grandson is a remarkable young man. I can only hope my son overcomes his challenges and becomes as successful in his own way. Thank you for such a positive story. xx

  32. This is what’s wrong in everything. I’m an autistic adult, and no one ever asks me about how I feel or really tries to see the world the way I might see it. If people in charge of these training programs just tried talking to us they’d have a completely different idea of how to teach and relate to us. My son is also autistic and I have to homeschool him because the school system was so damaging to him. But yes, we love, we feel emotion (incredibly so to the extent that it can be too much which forces us to shut down and appear emotionless but it’s just a coping mechanism), we’re imaginative and creative and many of us wouldn’t change being autistic for the world. We just wish that the world would sometimes adapt to us rather than forcing us to adapt to the world. I am a photographer, I’m open about my autism in the hopes that I can use what I do to educate people and show that we have value and are human too 🙂 Your blog post was so lovely, I hope it educates at least a few people to look at us differently.

  33. Thus is so beautifully written. My four year old son is awaiting an assessment for autism. He has just been diagnosed with a rare chromosome microdeletion and he certainly displays lots of autistic traits. This is such a wonderful post. You should think about contacting the Mighty and asking them to publish this on their site.

    #twinklytuesdays

  34. Also I would really love to follow your blog but I can’t see an option to? I have followed you on twitter ect bit do you have an option to follow the blog so I don’t miss any new posts?

  35. Great blog post. Have shared. Very interested in positive education and I think this is exactly what needs to change. Greater awareness, support for staff and understanding of individuals. Children and adults with and can have their lives dramatically changed with even just a little understanding and awareness as a start. Hope your post gets shared far and wide.

  36. Lovely and powerful. Thank you so much for this. My son and I are grateful for the community of those in education who are trying to do better. We will get there.

  37. I was once an autistic student, and I made it all the way through grad school. Now, I’m an autistic worker. I’ve had some difficult times, but now I have an understanding boss. I hope you keep this message going, because this is what is needed and it needs to spread into the culture at large. We are adults for longer than we are children.

  38. What a thought provoking entry…

    I work as an in class support worker at a local College of Further Education (the college specialises in the construction industry) – and we do have some students who are on the Autism Spectrum.

    Please may I share the article with my colleagues at the college?

  39. Now think what it must have been like for some one in the 1950s who had to endure the hell of a school that had half educated sadistic teachers who would just beat the crap out of anyone who did not perform or conform to the so called norm.

    1. I am sorry that anyone ever had to go through such an experience. But I wasn’t alive in the 50s and I can’t change them. All I can do is write and campaign and spread awareness so that my little boy and future generations get better treatment.

  40. 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

    1. 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

      1. 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

    2. 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.

  41. 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

  42. 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.

    1. 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!!!!

  43. 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.

  44. 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.

    1. 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.

    2. 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

  45. 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

  46. 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.

  47. 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.

  48. 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.

  49. 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.

    1. 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

      1. 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.

  50. 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

  51. 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.

  52. 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.

  53. Pingback: Spectrum Sunday #12 - Sons, Sand & Sauvignon
  54. 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.

    1. 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…

  55. 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…

    1. 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

  56. 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?

  57. Thank you for such a considered piece of writing. Undoubtedly our wonderful children need additional understanding at mainstream schools. This is why EHCPs are helpful. Sadly many local authorities are using SEN funding to legally challenge requests for EHCPs. This seems immoral to me and is why I signed the petition below.

    https://petition.parliament.uk/petitions/132715
    Above is a link to
    UK Government and Parliament Petition webpage
    The petition asks for “SEN budgets need to be ring fenced for children’s education not LA legal fees.”
    Mr. Ed Timpson claimed that “No child should lose their support simply because the system is changing”. Conversely parents find that Local Authorities regularly remove vital support in the transfer to the new EHC Plans.
    Severe budget cuts to Education mean that parents face an adversarial system.
    10,000 signatures are needed – please sign.

  58. This is a beautiful post. I had no idea that the world could be experienced as so overwhelming for those with autism. I understand that each individual will have different needs and reactions that are unique to him or her and comprehend how ill-equipped our current education system is to deal with this. However, I consider it would be a momentous task to develop the current system of teaching to facilitate the learning of so many individuals. As each person experiences the world differently and should be treated as such, in order to that each gains the most personal achievement from education suited to THEIR needs & not grouped under a convenient banner such as ‘autism’, I struggle to imagine how this can be achieved in our education system at all. Yes, absolutely it seems as if there is a great need for teachers to be better educated, but even then, they must be able to loosely adapt this new knowledge to each individual. Do you have any suggestions how, from the individual’s standpoint, things could be improved? For example, someone mentioned their son wears ear protectors to block out auditory over sensory stimulus, but this perhaps wouldn’t be required for each person? Would it make more sense to teach small groups, perhaps in less visually ‘hectic’ stimulus rooms, or with lower lighting levels, or have some way of assessing each child in various areas to discover their individual ‘triggers’ so these can be accounted for? Apologies if any of my comments are ignorant in any way – I have no direct autistic experience, nor am I a teacher, however I do encounter many children with autism in my daily career and I would be interested to hear any advice or tips that anyone may have that I can either adopt or be aware of to make my and their encounters more enjoyable and constructive.

  59. As a parent to me it is the complete lack of disregard of a parent’s knowledge about their own child too. Teachers need to listen to us “experts” more.

  60. I suppose that your opinions about An apology to my autistic students…
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  61. “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 autistic students display behaviour consistent with sensory overload.”

    Exactly this. It’s the same as with the training about bullying (the last I heard, anyway). It’s just woefully, woefully inadequate. Teachers are totally let down.

    I always had shutdowns rather than meltdowns when I was going through school, and while they tend not to cause quite such big problems, I still got enough hassle for being so withdrawn. Which of course only overloaded my brain further, so I withdrew even more. School was a horrible, horrible experience, and I think it still would have been if I’d only had the sensory issues to deal with. Like having to wear certain clothes, to not be allowed to wear my coat for pressure, to not be able to sit in a dimmer or cooler part of the room… there are so many things like that, and they all add up. But of course it never is only the sensory issues.

    Anyway. Thank you for explaining so clearly what the problem is with autism awareness. There are plenty of autistic people who are able to create analogies for our experiences that help allistic people understand what’s going on with us, and those kinds of resources should be used, instead of treating us like wild animals who need containing or forcibly dragging out of ourselves.

  62. Have you ever considered writing an e-book or guest authoring on other
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