Can We Take Autism Acceptance Too Far?

My husband is autistic. Both my children are autistic. I am a huge advocate of autism awareness and acceptance. However I am also a realist and deeply honest and something that has been worrying me more and more is the fact that we seem to be moving perhaps too far in our pursuit of autism acceptance and I am now wondering if the scales are now tipping too far the other way?

What do I mean?

Well for many years the voices of autistic adults were ignored and suppressed. In more recent years, thankfully, this has been changing and some of the most successful advocates for autism are now autistic adult self advocates. This IS a good thing and I don’t want us to stop hearing from autistic adults. I have learnt so much from them and I would love my own daughter to emulate some of them as she matures and grows.

However, there is a balance and with the growth of self advocates there has been a real suppressing and abuse of parents of autistic children (and adults) who have been threatened and bullied because their thoughts seem to clash with the autistic self advocates.

You see autism is a very different experience for different people. For some adults it is just seen as a different way of thinking or a unique way of looking at the world and for them that is absolutely fine and right. Then there are parents, like myself, of children who may never talk themselves and who have extremely high care needs and require round the clock care, diagnosed with the same condition, yet living very different lives. For those families, and I say families because it affects everyone not just the autistic child or adult in these cases, autism is a huge disability and they have a right to voice that too.

Here is a good example of how things have changed:

Six years ago when my son was just four, screaming all day, smearing, non verbal, still in nappies and attacking me I would read posts on support groups which read ‘Help My child is always in meltdown, attacking me and stimming. I’m exhausted and struggling.’ I could identify and I would say so. So many others said similar and the person posting was validated in their struggles while a few would give some ideas of things that had worked for them. Everyone wanted to help both the child and the parent but at no point was the parent made to feel awful for struggling.

Fast forward six years later and the same post in the same group gets very different comments because things have changed. We have been told by autistic adults how much they need to stim and how we need to accept them for exactly who they are and embrace their differences. While that is absolutely right it has also lead to parent bashing and now the same parent gets comments such as ‘how dare you make this about YOU!’ They are called a martyr mum for struggling and some even go as far as to threaten to report them for abuse claiming the child is struggling because they are such an abusive parent. What then happens is the parent feels worse than ever, even less equipped to support their child and even more isolated than before.

Then there is the cases of genuinely concerned parents desperate to help their struggling children asking about therapies in order to help their child make friends, communicate better or cope better in school and they are jumped on by autistic adults who were damaged by certain therapies as a child and who say the parent isn’t accepting or loving their child as they are because they want to change them.

We are fast reaching a point where parents are no longer allowed to be human, or ask for support or want to help their autistic child. We are no longer allowed to mention anything that even hints that our child struggles or that they have any difficulties or we are accused of ableism.

Apparently I am not politically correct and ableist by saying my son has severe autism, he is non verbal at ten, not toilet trained and has the academic ability of a baby. However that IS exactly what he has. He has low functioning autism and his reports even state ‘severe mental impairment’. Stating that he won’t get married, have children, live independently and need 24 hour support all his life is suddenly taboo and offensive because his autism is just a different way of looking at the world and nothing more. According to some self advocates I should have my son removed from my care because I dare to say his autism is a disability. Apparently none of his difficulties are actually his autism and all other conditions. They say my attitude is what disables him and not his autism.

We need the voices of autistic adults, as parents we need to know what to avoid and how best to support our children BUT we need to also be allowed to struggle too. The seesaw of acceptance has to swing both ways.

For a long time parent voices out weighted those of autistic self advocates and that was wrong. Now I feel we are in danger of swinging the opposite way and parents who are sleep deprived, heartbroken at watching their child self harming or struggling with suicidal thoughts, or just exhausted by the same ten seconds of a video on replay for 8 hours, are vilified for daring to say autism can be difficult.

Can we take autism acceptance too far?

If we continue to see it just as a different way of thinking or seeing the world we are in danger of losing educational support for so many struggling children and throwing them into mainstream because ‘autism is not a disability’.

We are in danger of losing vital financial help for families because they are too afraid or programmed not to admit their child’s struggles.

We isolate struggling parents leading to an even bigger chance of vulnerable children being abused and parental suicide.

We cut back vital adult services for those who need it because we see anyone with autism as just different and not therefore in need of support.

We need a balance and an acknowledgement that autism is experienced differently by different people and that’s ok. Some need very little support while others need much more and that includes parents as well as autistic children and adults.

Until we accept that the balance of autism acceptance will never be right.

59 thoughts on “Can We Take Autism Acceptance Too Far?

    • What a fantastic post. I was a one of those isolated parents and was judge by my parenting. My son is non verbal and low functioning, his autism is severe and has a learning disability and ADHD. Still today that he is nine years old, we do not have a Section 23. I was so desperate and I think there is very little hope for Children like ours to get their needs covered. Hugs momma.

      Liked by 2 people

  1. Historically, we’re in the early days of understanding autism and learning how to deal with it. The pendulum swings from one extreme to the other until it reaches a resting point where reason begins to take precedence over emotion. I don’t have any children on the spectrum and I’m barely on it myself, but I encourage you to keep speaking out.

    Liked by 2 people

  2. So beautifully written Miriam and voicing exactly what has to be said. I think many of the autistic self advocates feel the same. The good work that is being done by people listening and cooperating with each other has been overtaken by a very militant and cruel movement. True some of the older autistics among them feel hurt by things that happened in their lives. But as we keep saying You know one person with autism you know one person with autism. Same goes for parents. Thank you so much for taking the time and energy to write this. You are such a good person and yes Life with Autism is not a wonderful thing for everyone.xx

    Liked by 3 people

  3. Well said. I have worked for years as a therapist and have seen this trend coming on and I completely agree with your sentiments. Suddenly people are showing intolerance in new ways and we need to be aware of thins and ensure everyone is supported in their family’s autism reality.

    Liked by 2 people

    • I definitely see this happening. I’m glad that these adult activists and some of our children are finding their voice and gaining some independence. Where I think the disconnect is that they have enough freedom to feel like an adult and someone important but they don’t understand what goes on behind the scenes to make that happen. Since they are most likely not facing the full responsibilities of adulthood or parenthood they don’t understand why they just can’t have what they want or why some things are a burden. Yes I understand it’s not easy for them either but when you’re the one responsible it’s a big deal. Things go wrong it’s on me. Plus I need to make sure the bills are paid, the family and home are cared for. This I have to say is the hardest part of this for me. I used to think what selfish jerks when I seen some of these posts from these young adults. But now I really believe they just don’t know.

      Liked by 1 person

  4. A big hug for you Miriam. I teach (martial arts) to many children and adults on the Autism Spectrum and am in awe of their wonderful parents who do their best to seek help and guide their children in this confusing and often cruel world. What you have written will resonate with many of them. Your article is articulate, thoughtful and brave.

    Liked by 1 person

  5. I was just having a conversation the other day about this exact thing.
    It IS great that there’s more public awareness, but the public isn’t getting the whole picture. Children like your son & my grandson DO exist and they should be recognized. Since they can’t speak for themselves, we need to be allowed to speak for them, not told to sit down and shut up.
    Fantastic post!! Thank you🙏
    Is your son doing well now after his surgery?

    Liked by 4 people

  6. Thank you for sharing you deepest thoughts and fears. My grandson Christian is non-verbal, not potty trained at 6 yrs old, and just an amazing boy. We don’t know what God has planned for him,and he is our special gift. In the past five years I have seen his help switch from helping him grow and learn to main streaming him everywhere. My daughter has a full plate as she tries to seek what is best for him. We as a family unit help in many ways and our family is large and very social, so he is forced to be in large group settings. I have seven children and 14 grandchildren ( 2 more on the way). We include him in everything we can. I know how hard it is. You are the parent and have to make many hard decisions.

    Liked by 2 people

    • Hi Mary Beth you do sound like a Grandma who loves her grandson to me, and that is a wonderful thing for an autistic child to have. My son is 12 and non-verbal, he is now toilet trained but it took about 7 years, 3 if which were pretty intensive. I have a lot more patience and understanding for my son now than I did, I wish I could go back and re-do some things.. I have found that encouraging him and being attentive and giving him time and space is the best method and we were not always like that and pushed him into things like ABA, or got annoyed with him for not using the toilet. Now I try to imagine how I would like to be treated if I was non-verbal and couldn’t communicate and the world was a strange and confusing place for me. Encouragement and support is the best way, and it may take our kids 1000 times or more longer than other kids to get something, but they can do it 🙂

      Liked by 1 person

  7. The writer has mistakenly assumed that people who work in the psychology profession are saying that all stems are okay. They are not. Unhealthy stems that injures the self or other people need to be prevented. Healthy stems like flapping the hands, repetitiveness, etc… are ways in which an autistic individual will calm themselves and recenter. These should not be prevented. Autistic adults who say therapy is bad, are generally referring to the harmful practices created in ABA therapy, where children were forced to sit on their hands, or punished for not looking people in the eyes. It used to be common practice to withhold snacks or even bathroom breaks if a child did not comply. (Some still do this, so be aware) Professionals are beginning to realize now that this was psychologically damaging to children. Autism, even if it’s called neurodiversity, is still seen as a disability and will continue to be seen as such. Keep in mind I speak from a neurodiverse perspective as well as a psychological perspective. (Mother of 3 on spectrum, autistic partner, and self, BA inPsychology with Autism/neurodiversity perspective) It seems the author is not getting the support that she needs, has been wrongly criticized, and is a little worried about what’s going to happen to her children. The field of psychology is doing its best to make sure that autistic individuals have the correct support systems in place and are not punished for behaviors that are actually soothing and necessary. But yes, more could be done to support the families of autistic individuals.

    Like

  8. Can I say I am an adult with autism. I used to be very challenging. Finding my voice through FC changed me completely. I am still non-speaking autistic. The people who say we don’t need to be cured are not doing me any favors. I would love to be cured of all the negative aspects of autism. I am leading a fine life running an organization. My family always loved me. yet my life was a wasteland until I got a “voice.” I am aware that many live difficult lives – to say they should continue to do so is not helpful. My mother’s determined search for help back then helped me become who I am today. Watching her struggle made me think parents need help not blame. They are mostly loving but listen to me they need help. Help to understand, help to withstand terrible predictions from others, help to live through the dark days, patience to persevere,
    Be kind to each other.
    Chandima

    Liked by 1 person

  9. Thank you so much for writing this. I wish I had had the time to write something just like this. I am autistic and have a son aged 16 years, with severe autism, LD, epilepsy and ADHD, and I agree completely with you have said.

    Liked by 1 person

  10. As a therapist in one our autism conferences once said, “if you’ve met someone with autism, you’ve met someone with autism.” Just like life, all experiences are different for different people. There are many people seeking therapy that works and others whom the same therapy does not work for, all with the same diagnosis. The sooner people accept that their experience is not another’s, the sooner they can move on to a more supportive dialogue. I am sad to see this trend you are experiencing. You go, momma, and you do what you need to do for your family. Take care of you, too!

    Liked by 1 person

  11. I’m autistic, self-advocate, I respect parents’ rights to seek help, therapies and express struggles. Personally I don’t have much experience of people saying ‘autism is not a disability’ it seems an obvious to me that it can be. I must say 99% of the people who say it’s only disabling ‘because of other people’ have misunderstood the social model of disability and taken it to mean that society or people’s attitudes are the only thing that causes disability (that isn’t what Mike Oliver said when he wrote the social model). Some issues between parents and advocates might be down to the double empathy problem, which means with two different brain types involved in an interaction (autistic & non-autistic) misunderstandings are bound to occur. Especially online, often through twitter where these interactions take place, which is reductive in it’s word count and many people struggle to make points clear. So on social media discussions can devolve into a fight when it didn’t need to be.

    I disagree with your argument on labelling ‘mild/severe autism’ or ‘low-functioning/high-functioning’, because I think those labels are misleading and inconsistently defined. To say “autistic, profoundly learning disabled, requiring high support needs” or “autistic without learning disabilities” is more clear in my mind. However, I do believe language takes a while to shift, many parents will prefer the clinical labels and that’s completely their decision to make. I can only share my opinion, but I don’t condone bullying someone who disagrees with you or suggesting they’re abusive. Also, I think many autistic and IDD people are not ok with statements like “so and so has the abilities of a toddler” because it can be used to deny them human rights- Ivanova Smith explains it here (she is intellectually disabled herself)- https://www.youtube.com/watch?v=8OWHx_Q70F8&t=1s
    Having shared this point, I should also make it clear that I think there are more serious issues at play for autistic people than how people use labels- such as lack of support services, abuse in care homes like Whorlton Hall and quack ‘cures’.

    The internet can be a dark place and some people do attack people who disagree with them and that’s not ok. Others just have knee-jerk reactions and send tweets they didn’t really mean because of previous experiences with trauma.

    There are several autistic and otherwise disabled people in my family, with various needs, so I have experience of different types of people. I will say this: don’t let a vocal minority of aggressive moral absolutists and identity politics put you off of engaging in these discussions. My sympathies are with parents who have encountered abuse. In my view the issue is not “taking autism acceptance too far”, but with people viewing their own way of being and their own opinions as the only way of thinking about these issues. In reality, the current situation for autistic people is complex and some people make sweeping generalising statements that can be harmful for families. I chose to comment on this because I agree with you that it’s good to keep the dialogue between parents and autistic adults going and try harder to understand everybody- including those on the spectrum who can’t advocate for themselves and whose parents fight hard for their quality of life.

    Liked by 4 people

  12. You know my thoughts on this, as I said to you on messenger, I completely agree. My support needs are kind of middling, so I have only a little idea what it’s like to live like your little chap, and no idea what it’s like to parent him. I think you are clearly a great mama and that the community you have unfortunately come into contact with has got this so very wrong. I am totally completely for disability rights, as I see myself as disabled. But I know we won’t get there alienating good people and good parents who can bring so much to the table. There are those of us who want to share this fight together with you out there, it’s just really difficult to try and avoid the not so supportive people as I think it’s the nature of the Internet these days. Sending hugs.

    Liked by 1 person

  13. Also, the ANW member who took issue with your use of terminology on ANW has now posted this very article as an example of what she has learned since that discussion – without realizing you had written it. ❤ We are learning and growing every day. We'd love it if you would come back.

    Liked by 1 person

  14. Acceptance can never go too far. This isn’t about autistic adults vs parents, the majority of autistic adults are parents so it’s a false split and one which infantilises us, we’re not all lost teenagers pushing against parents, I’m in my 50s. We should be able to have a polite discussion about labels such as ‘severe autism’ which many of us feel are standing in the way of people getting the help they need. But we all feel attacked. I regularly have to block non autistic parents who are very abusive to me, I know many parents feel autistic people behave the same way towards them. We need to talk and calmly!

    Liked by 1 person

    • I would feel awful if I was abusive to anyone and I love hearing autistic voices even when we do t always agree. It’s about respect and understanding which you seem to have.
      Thank you for reading and commenting.

      Like

  15. Sadly, this seems to be an evergrowing trend in our society that doesn’t just affect families with autism. I think specifically of Mandy Harvey and her performance on America’s Got Talent. She actually received death threats from some in the Deaf Community for “Oralism” even though she utilized ASL and an interpreter.
    I believe we all need to keep in mind that our journey through this life is just that, our journey. Someone else’s journey is theirs and while we may empathize, sympathize and even begin to understand because of similarities in our experiences, we should NEVER judge another’s experience. For the most part, I believe all parents want what is best for all of their children. We want to see them thrive. We want them to feel loved, valued, and secure. Our methods may differ but our desire to do what is best for our children is the same. Please, treat each other with the same love, compassion, and understanding that you desire for yourselves.

    Liked by 2 people

  16. I hate most disabled “self avocates” in general because of these bullying of the parents and other relatives of the disabled. The political left is so obsessed with deinstituionalization of both the developmentally disabled and mentally ill it has caused literal deaths by the thousands. The poltical right loves the idea because of perceived cost savings. Any cause such as an autistic adult dying of abuse in a group home to a schizophrenic mass shooter that could have been stopped had he been in a mental instituion. Kids with severe autism like your son need a special education school and in home support from a nurse asking for these services is becoming labbled by social justice warriors as “biggoted”. I have no idea what these are called in the UK.

    Like

    • First of all, most people who mass shoot are not mentally ill. This is damaging and inaccurate. Most of them are privileged angry people who have a history of abuse. Secondly a lot of institutions were horribly abusive. Right in my state children still receive skin shocks over things like not taking off their jackets. You’re ignoring how many mentally ill people were tortured and killed in places like this. Stop acting as if only mentally ill people are violent when most crimes are caused by so called normal and sane people! This is a damaging myth.

      Liked by 1 person

  17. I think what you are are saying is completely fine. Whenever someone has “something” we like to give it a name or a label. For me, ‘labelling’ someone is more about giving them and their families the right signposts to wherever or to whoever they need to go to get the right support for them. One size doesn’t ever fit all properly.

    Like

  18. Dear madam.I don’t know where to start.such a breath of fresh air. Unless I go back and log every passage it will be hard to get direction.so ill talk from the heart and experience. As a father of 3 autistic son’s and have studied and I live the life. Autism is not a problem we deal with now and then .it’s every minute of every day. But over 26 yrs of since my first son was diagnosed I have heard many many war stories.I have seen the difference in public perception and the doctors and specialists give out diagnosis like they were sweets.heard many ppl shall I dare to say.jump on the autistic bandwagon. We hear about all these groups set up and researchin being done.but really just exchanging there children’s problems.I’m quite private and not one to air my problems but will help any families with advice or needs or experience I have.I’ve just had 7 mth battle with the local authorities to get my son funded for special needs school and ended up in royal courts of justice at tribunal. I have every respect and hope for real autistic children that they get the help and support they need.but while autism is looked upon as it’s just life and acceptable. We have no chance with awareness and support. Ask any parent with a child with autism and they would give there life to be autism free.it’s heartbreaking. It’s fractures families. It’s exhusting. It’s our lives.be that what it is.I’m writing a book .I hate autism but I love autistic children. To the lady who wrote this post I applaud you and I wish you the very best. I myself have aspergers and have struggled for many years to get to where I am today.but we have the most beautiful and special children. But drive us mad.bless you.

    Like

  19. I am autistic, have two on the spectrum we All are ‘high functioning’ I haven’t seen any of the outspoken advocates say it’s not a disability. I don’t think anyone would ever consider it not being disabling.
    Most advocates are saying really that the whole rhetoric and all the thinking behind most of the support is wrong. I cannot see why we wouldn’t listen to those with the first hand info.
    I have seen some highly charged talk between parents and advocates. The issue is that a curist movement has had hold of the support and therapy and done serious damage to thousands. The anger sadly is being mis directed. Angry and traumatised autistics hear parents talk of therapies and it triggers them. I don’t agree that we have gone too far, I think actually parents need to simply know where to direct highly sensitive questions to avoid the reaction. At least until the curist movement has its power removed. After all even if you are high functioning and yes autism is a huge spectrum, they are able to give non verbal child a voice and parents a better idea of what your child experience may be.

    Like

    • Why is stimming a bad thing tho? And disagreeing isn’t attacking. Parents only seek to, in general, want to listen to people who have a negative and inaccurate view of autism. That’s the problem. Functioning labels aren’t accurate or helpful. Your son isn’t a baby. Viewing him as one isn’t going to help him. Autism parents continue to want to view autism as an enemy to fight and that won’t help anyone. It’s part of the child to work with but anytime autistic people say autism isn’t doom and doesn’t have to be seen as miserable we get pounced on

      I also can’t see how it’s a bad thing to want to watch a video over and over. Ill listen to parts of a song over and over. Sometimes you got to pick your battles and just let an autistic child enjoy themselves.

      Like

  20. I’m deeply saddened by your comments. It’s clear by them that the point of many autistic advocates has been missed. Please let me restate it for you.

    There’s nothing wrong with being a parent who struggles, who seeks help and support. Absolutely nothing wrong. In fact there are several groups on social media platforms where autistic adults invest countless hours to help, support, brainstorm resolutions and encourage parents of autistic children.

    The common boundaries these groups have… their line in the sand so to speak… is that parents can’t be abusive to their autistic children. Pretty reasonable boundary right?

    Abuse comes in many forms including portraying autism as a huge flaw which needs to be magically cured. Autistic adults and autistic advocates understand better than you know that life is not always pretty. They get that life is hard and beyond unfair. They get it because they’ve lived it – many as children and now as parents.

    I hope you and other parents of autistic children hear clearly that the overwhelming majority of autistics wish you and your children nothing but the best. I hope you can see their boundaries around abuse and bigotry are as much a gift to you as they are for your children and other autistics.

    Liked by 1 person

  21. My son/grandson was born at 25 weeks weighing 12.5 ounces. My daughter died when he was 9 days old. He is nine years old now and shows no signs of becoming potty trained. He has not been diagnosed with autism. He is legally blind with glasses, had surgery for NEC when he weighed about a pound, had PDA, surgery for detached retina when he was two. He also started stuttering when he was about four. He spoke plainly up until then. He can read, and is good at memorizing things. He can’t write, but can type. Doctors always tell me what isn’t wrong with him , but do not seem to know what causes his problem. There is no one who understands his problem or what I can do to help him or if I just need to accept it.

    Like

  22. I have a son diagnosed with high functioning autism, or previously known as Asperger Syndrome. He is verbal, has learnt plenty of social skills, mainly from having to deal with his siblings. His IQ is almost the one of a genius. We are from Brazil and there is almost none autism awareness there. We were told by all professionals we took him that his challenging behaviours were due to bad parenting. Even our family used to tell us that. He is 7 years old and still soils and smears. He doesn’t look us in the eye, he runs away, spins and starts singing “Mamma mia” when he’s overwhelmed. He also is very oral sensitive and puts everything in his mouth, to either lick or chew. But we were told it was all because he was controlling us, because he was bold, etc. Not helping at all. Some people warned it might be ADHD, but he was too young for a diagnosis. He used to bite his classmates everyday and would make them bleed almost every time.
    We came to Ireland more than 1 year ago and he started school. I spoke to his new teacher regarding all his challenging behaviours and everything that we struggled to learn in order to prevent at least that the other kids wouldn’t be hurt by him. She then screened him for Asperger Syndrome and showed me all the questions, to validate with her. There it was: the description of my son! She helped us get a diagnosis and it came really fast. It was both a relief and a concern. We finally had ways to help him: he really appreciated his chewing toys, movement breaks at school, he now look us sometimes in the eyes. He finally felt understood, heard and respected.
    Even though he is in the very mild end of the spectrum, it was really tough for us as a family. And during the diagnosis process, I heard from my family that I was creating an illness for my child!
    During a conversation with a relative, she told me I was wrong to say it was a disability, that it was only a different way of perceiving the world. She didn’t have to clean his underwear sometimes 3 times a day, to give him a shower every time he soiled because it was all spreaded, to clean the walls and furniture from his poo, to prevent him from putting harmful things into his mouth, to carry him to the toilet on my lap when he needed to poo, to hear from everybody else that I was a bad parent everytime he hurt a kid, to see him excluded from birthday parties and play dates and all the other children talking about it, to deal with the school expelling him.
    I think every parent needs help when dealing with a special kid. It’s not something that’s natural unless you dealt with someone in the spectrum close to you before. Parents need training to help those kids with their struggles, support when they are themselves overwhelmed by all the demands this condition brings and understanding they are ordinary people, with their own difficulties and struggles.
    I myself think I might be in the Spectrum. I’ve heard people asking me: what’s the benefit of seeking a diagnosis? You won’t be entitled to any benefits. But that’s not the point. A formal diagnosis might bring understanding for all my differences and difficulties, perhaps helping me accepting myself.
    Anyway, I totally agree with you. Parents shouldn’t be attacked or threatened. Very well written.

    Liked by 2 people

  23. You have raised a very important topic. Here in the UK’s wonderful DWP world of benefits, people’s disabilities are not taken into account, only how their condition affects them. So an autistic person does not qualify for PIP because of being autistic, but only if this results in them having high care needs, or being unable to travel alone or to walk. This has been used as a weapon of abuse by the DWP – for example denying benefits to amputees on the grounds that they can haul themselves 30 yards on their prosthetic legs, and disregarding the pain and injury this may cause them. This is obviously a bad thing, as it has been used to withhold welfare benefits from people who really need them.
    However, in social care, education, etc. this can be a useful way of approaching it. Instead of quibbling about whether we should be calling something a disability or a neurodiversity, perhaps we should simply be asking, “How is this particular child affected by his/her condition? What support should be put in place to level the playing field for this child compared with other children?” And similarly, “How are this child’s parents/siblings affected by living in a family where someone has these particular issues? What support should be put in place to enable the parents to care for all their children and themselves in the particular circumstances in which they find themselves? What support should be put in place to ensure that the siblings in this family have the same rights and opportunities as other children?” No labelling, no finger pointing, just meeting needs. And it’s pointless to pretend their are no needs. When one study has found that parents in these circumstances have the same levels of PTSD as soldiers in combat zones, we should simply be asking what should be put in place to support everyone in this family to thrive.

    Liked by 1 person

  24. Thank you for this brave post. I’ve been thinking much the same, but way too afraid to say anything based on the extremist views I’ve been seeing on Twitter. (And the fact I’m not a parent, nor diagnosed with autism.) That said, I do see “both sides”: autistics (verbal and otherwise) need to be heard, in regards to what works. (Almost all dislike ABA, or what it used to be. I’ve had someone post at length about this on my Facebook page recently.) And no one should be receiving electric shocks to try to change or alter their behavior. But… no, it’s not okay to say we want to accept self-harming behavior, or smearing, or eloping. How to strike the balance? When is a stim not okay? What’s too much? Vs just right?

    The only note I would add is, don’t be so sure you’re child is intellectually disabled. I learned this from Ido Kedar, who wrote “Ido in Autismland”. He’s an adult non-verbal autist who writes beautifully and eloquently of how he felt trapped in his body in special ed class, unable to express how much he knew, so perpetually frustrated as they kept drilling him on “2+2 is?” (4! yes, 4 dammit! I know this, how about the square root of 42? – paraphrasing). They literally thought he could not understand what was being said.

    http://idoinautismland.com/

    Thankfully, with his mother’s help, he gained his voice via RPM, Rapid Prompting Method taught by the originator of it. Will this work for everyone? We don’t know. And obviously your son very well could be truly intellectually disabled and that is also okay. But I would presume competence and just continue seeking to bridge your worlds as best you can.

    I’m not a parent, but am now a suspected overlooked adult female autistic “cousin”. (Literally, I now have a diagnosed cousin on my mom’s side.) Anyway, I’m not fully accepted by either camp (autistics, or NTs), so I live in “no Jan’s land” attempting to straddle the divide. I applaud your bravery posting this. I hope it’s received in the loving spirit with which it appears to have been given. And I hope everyone can keep a slightly open mind, agree to disagree and not shut down or erase anyone’s voice, no matter how strongly we disagree. Lest we be guilty of the very thing (erasure) we are accusing the other of…

    Liked by 1 person

  25. My heart aches. When no one cares, the parents and families do! Love your families, be kind to your kids, have patience, and most of all… Be there for them when they need you. Parents are their children’s voice…their advocates.

    Liked by 2 people

  26. It’s when I see things in EHCPs described as ‘strengths’ and they are NOT… they are ‘NEEDS’. Eg. in the strengths section “With support from his LSA, prompts and a writing grip David can form the first letter of his name.” Don’t get me wrong, I’m totally pleased BUT, this should not be in his strengths section…. it shows his needs. And it is OK, no BEST, to say it like that! Well.. in my opinion anyway.

    Liked by 2 people

  27. I agree with what you write. I wrote a related article about this kind of issue (link below). It all comes down to the fact that autism is hugely varied condition. It encompasses some of the most disabled people on the planet and also some of the most able people on the planet. A high flying aspie with a brilliant career in silicon valley does not really have an awful lot in common with a severely disabled low functioning/high care kid who will never dress themselves.

    We often get stuck in our own autism bubbles and make the mistake that the autism in our lives is how autism in general IS. My son is kinda mid spectrum he talks but will nonetheless probably need care for the rest of his life, although its not crazy talk to think he might live independently one day. So for my son’s autism broadly speaking I subscribe to the neurodiversity view of autism. I see his autism as not being a disability per se. He just has a different brain.

    But I don’t actually know what its like to have a low functioning severely affected kid. So it really isn’t my place to judge or dictate to people who do how they view the autism in their lives.

    Obviously autistic people should have a voice about their autism but its not so obvious that they should have a voice about other peoples autism especially when those “others” can’t speak for themselves. Assuming that the experiences that one part of the spectrum have are similar to other parts is a big assumption. Just as I have no real concept of what its like to be the parent of a high care autistic kid so to, I suggest, that higher functioning autistic people have no real concept of what it is like to be on the severe end of the spectrum. Its far too varied for any monolithic view.

    https://autisticbean.wordpress.com/2018/09/24/neurotribal-warfare/

    Liked by 2 people

  28. This doesn’t just happen to one disability. Quite often, parents who need to vent or share their experience of their childs’ condition are told that they should not because their child may read it one day. But parents need to get support too. I would like to hope that a parent would annonimise their childs’ struggles and they wouldn’t include all of what their child goes through but enough to get it off their chests.

    As for the word “ablism”, what does this even mean? It seems like a silly little word to be honest. The social model of disability says that it is society that can disable a person. This is not to say that the persons’ disability doesn’t exist, but that society can do more harm by placing barriers that should not be there for a person.

    Keep on writing and ignore the keyboard woriers 🙂 xx

    Liked by 3 people

  29. I absolutely agree. I’m also not politically correct about it apparently, because I truly believe that high functioning and low functioning are two different disorders. Trying to lump both in together is not fair on individuals and it’s also not in the slightest bit reflective of what they face. I’m all for acceptance of how neurodiverse brains have a place in our society but sadly my son won’t be able to function highly enough to be part of society, and so he gets forgotten. Excellent post, thank you for writing xx

    Liked by 3 people

  30. Yes! It is interesting to me that people who advocate that children with autism see the world differently, do not always make the leap to the fact that children with autism might benefit from being taught differently as well. That is what all parents are responsible for, teaching their children. We are not supposed to let our children, any of our children, fend for themselves or run wildly through their lives. It is parents’ responsibility to prepare their child for success in society. That includes children with autism! We might have to go about it differently. It might take learning new strategies. It will take extra effort, and the outcome will be unique. Still, it is my moral duty as a mother to prepare my son as best I can, so that he can lead his best life. I am not ashamed of helping him define his best life or of helping him prepare for it. Any parent worth their salt does the same thing for their child. Other parents share struggles and strategies all the time. Parents who are navigating autism, and all its comorbid followers, must claim the same right. Hang in there fellow families! Keep doing what is best for your child.

    Liked by 3 people

  31. As an adult on the spectrum, I completely agree with you. The way most autistic adults are acting is sad and embarrassing. No person on either side deserves to be attacked for any reason at all. Yes, autistic adults have some good insight BUT parents have no reason to be attacked for doing what they can for their child’s needs.

    Liked by 2 people

  32. I have recently run across some of these advocates. They seem to be very militant.

    I raised three kids on the spectrum. Am probably on the spectrum myself. My kids are all high functioning — yet struggled with speech, both mechanical and pragmatic, social skills, self-regulation, coordination and muscle weakness as they were growing up.

    As adults, they have struggles, too. My son works for a very large company as a programmer. But he is struggling now with an employment crisis. After seven years of raises and excellent reviews, he is on probation. He is freaking out. As anyone would. He is afraid he’ll never get another job. He has mentioned suicide to me last week and to his dad this morning. We are very worried. No amount of encouragement seems to be helping. He is getting plenty of interviews while still working. His skills are in high demand. But he can’t think straight.

    It’s hard to be an adult with autism.

    Our oldest daughter, who has a bachelors degree in accounting, lives with us. Or more correctly, we live with her. My husband was diagnosed with cancer three years ago, and we decided to help her buy a condo, and we live with her in condo. We pay for food, transportation, internet, and other costs. She pays the mortgage and utilities. It’s about an even split. It’s a very modest, two bedroom condo in the midwest. She works at a call center in IT.

    Our youngest daughter has struggled with depression for almost three years after giving up on grad school. She has the fewest issues on the autistic scale.

    I agree that the ideal situation is that everyone should accept people with autism. But you know, these demands to erase autism really help no one. The parents do deserve credit for the work they do. The kids do deserve credit for what they have accomplished. And if it was anyone else doing some of the things that autistic adults sometimes do – without the autistic diagnosis, would it be without consequences?

    In reality, like it or not, we have to try to fit in with the rest of the population.

    Liked by 2 people

  33. Thank you for this blog, and I hope it makes people take stock and rethink the way we all interact.
    I’m acutely aware that each family’s journey is different and there is no “one size fits all” approach to creating happy, value filled life for all people on the spectrum and their families. Shouting and denigrating each other on social media is not going to improve life for anyone. We need to work together respectfully and listen to and hear each other’s stories – whether of parents struggling or autistic adults suffering the after effects of dehumanising therapies and policies. There is a danger when people are depleted and suffering that we can be triggered and automatically graft a knee jerk reaction of our own experiences onto someone else’s journey without fully knowing or appreciating the circumstances. Circumstances are so different. People are so different. We have much to learn from each other.

    Liked by 2 people

  34. It is a complex issue. As someone Autistic I think our voices should be front and centre when it comes to matters that affect us, but on the other hand I do see cases where people overlook the struggles of autism because they won’t hear a negative word about it and insist its all sunshine and rainbows.
    Balance is key.

    Liked by 3 people

  35. Re the potty issues: I just want to say my son (on the spectrum) pooped in the toilet at age 12 and it was like night and day. No going back. It felt like a miracle.
    My mom and I were quite concerned when he was 6 years old and not using the toilet for poop, and I did not imagine at the time that it would be so long before it clicked for him. He could use a toddler potty chair for #1 (as we say), but no potty chair or flush toilet for #2. He pooped in his pants.
    An issue for him was he did not like the sound of anything hitting the water in a toilet, and it can help to remember/ to know that most people world wide do not have access to flush toilets (with water in the bowl) when a person cannot use one for whatever reason.
    Bless you.

    Like

  36. I am an adult with Asperger’s Syndrome. I have been told many times how ‘high-functioning’ I am, how ‘mild’ my Autism is, and it come down entirely to intelligence. I write well, I speak in a way which is more articulate than even most non-autistic people. This wasn’t actually the way it looked when I was four. I had speech difficulties and issues with aggression, among other things. I don’t feel ‘mild’ or high-functioning. My incapacity to fit in anywhere has brought me no end of severe depression and anxiety, whilst certain scenarios are hell for me, like walking around a busy, crowded space. I visited a train station recently and wanted to hurt myself, the anxiety was so bad. I live alone, and sometimes, when I am forced into doing things which ‘normal’ people do, with ease, the stress of it is too much. I have a meltdown, and occasionally hit myself. But people like me are in a double-bind, because we can write flowery prose and speak eloquently. I can’t be Autistic, can I?

    A few years back I had a neighbor with Classic Autism. He was entirely non-verbal and would stand outside stimming whilst making his noises. What was interesting to me was that I make some of the noises he made myself, but only when I am alone, because when someone who can speak like me does it, it’s considered borderline sociopathic, rather than developmentally delayed. His Dad used to do shifts in a supermarket at night, the young man’s parents had apparently no help. I never saw any evidence of a support worker. The young man regular had casts on his arms, presumably after having broken them in an act of self-injury.

    I have to be honest, even though I have resented strongly having a ‘high-functioning’ label used against me, I would struggle enormously to raise an Autistic child, or any child for that matter. I cannot begin to imagine how I would cope to see a child I had hurting themselves, or never speaking, and not knowing what to do to help them. I think there is enough compassion in the world for people to realize that it must be extremely difficult to raise a child on the autism spectrum who has highly acute needs, and very difficult to be a parent full stop. There are no rule books, nobody has all the answers. I must admit, I have often felt very bitter about being considered high functioning, and not being diagnosed until adulthood, and I have felt angry, thinking that parents like yourself consider me ‘not autistic enough’. But, your post struck a chord with me. I see how difficult things must be for you. You deserve compassion and understanding, not judgment. I wish you and your children well.

    Liked by 2 people

  37. I am so glad to read this post and some of the comments. I would also add that the impact of this danger reaches “high functioning autistic” people as well. I appreciate the superpower mentality and that is how I have been addressing it with my 10 year old son but the other night the following exchange happened:

    He asked me if there was autism in my family or his father’s family and I said that I didn’t think so. I asked him why he was asking and he said because he wanted to know if it was hereditary. I asked why he was wondering about that and he said, “Because if it was hereditary maybe someone was figuring out a cure.” That broke my heart. My first thought was, “Oh No! I haven’t convinced him enough that this is a good thing not a bad thing!” So I asked him if he thought of autism as something that needed to be cured. He paused and looked at me, as if he knew I was hoping he would said “no, I was just curious” but he said, “Well…it makes a lot of things tough for me. So Yes.” Then he said, “I know there are good parts too ..” and I quickly said, “You don’t have to say there are good parts. If I could take away your challenges I would.”

    I think I have done to my son what you are describing. Trying to promote the positive (which is fine) but the fact is it is also a bit of a hellish journey. Even though he is high functioning. And I have the right to say that. And he has the right to hope for a cure.

    Thank you for this post.

    Liked by 2 people

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s