My children do SUFFER from autism and I think we need to understand that.


I have just outraged and angered an entire community by saying that. Before you pin me to your dart board and vilify me on social media please spare me a few minutes of your time to hear me out first.

I adore my children. They are my heartbeat, my reason for being, my everything. I think they are the most beautiful human beings ever created, they are talented, hilarious, kind, amazing and every single day they make me proud.

They also both suffer from autism. I use ‘suffer’ deliberately. defines ‘suffer’ as:

verb (used without object) undergo or feel pain or distress: sustain injury, disadvantage, or loss: undergo a penalty, as of death: endure pain, disability, death, etc.,patiently or willingly

So sticking with the dictionary meaning let’s go through this. Not all apply to autism but here are the ones that do for my children:

Number one to undergo pain or distress. My children both undergo this due to their autism but in very different ways. My daughter feels very real pain when she experiences sensory overload and certain smells make her physically sick. Loud noise hurts her ears and someone walking past her in school is like them sticking needles in her. Her pain is real. Not understanding social situations distresses her to the point she has panic attacks and cries. My non verbal son experiences distress and pain daily as a direct result of his autism. The simplest of things changing or even a door open anywhere in our full street and he will self harm and scream for hours. He just can not cope and has no means to communicate why. That to me is pain and distress not just for him but for us too.

Number two: to sustain injury, disadvantage or loss.
Loss of ability to speak both consistently for my non verbal son and in certain situation for my daughter due to extreme anxiety; that is loss and disadvantage. To be excluded from social events because you are so limited in your interests or find social situations so complex and difficult is loss and disadvantage. To have the level of learning difficulty my son has where at 8 he can not write one letter or number nor can he read is a huge disadvantage in life. To still be wearing nappies at 8 is a disadvantage and loss. To not be able to dress yourself is disadvantage and loss. So yes they suffer from autism according to this definition too.

Number four: to endure pain or disability.
I see autism as a very real disability for both my children. They are unable to do what others in society take for granted. My son will require 24 hour care all of his life. My daughter has mental health difficulties which will require ongoing monitoring for most of her life. Socially they will both require support too. Their autism is life long and they require a much higher level of care than other children their age do. Do they need to ‘endure’? Yes I believe they do. A school day is huge for them both to cope with. The demands placed on them, the sensory difficulties faced and the continuous transition from outside to inside and different rooms puts massive stress on them both and it takes huge strength for them to get through every day. Autism causes them mental and physical pain at times in ways many of us don’t quite understand.

My children live in a world that is different to them and confusing. Their communication difficulties and social struggles make everyday a challenge. They struggle, they endure and they face difficulties. They are suffering.

It is apparently not politically correct to say anyone suffers from anything. The negative connotations associated with the word suffer make some people very angry. I am not dismissing that at all. Yet I am left with a big concern: If we continue to only allow people to use positive and politely correct language when referring to autism like it is ‘just another way to see the world‘, or ‘it is a gift‘, or ‘it is a difference to embrace‘ then are we doing an injustice to those who are in fact struggling daily, in pain mentally or physically as a result of their autism, and suffering as a result of inflexibility, social confusion and misunderstood repetitive movements like flapping?

My children need support. They need people to help them through their struggles. If that means I come across as negative saying they suffer from autism then so be it. Sometimes I have no choice but to break the taboo in order to get the support my children desperately need.

If by stating they are suffering it causes people to want to help, or makes them think about how they treat them then I feel it is justified.

I tell my children everyday how wonderful they are, how precious they are, how loved they are. I celebrate their achievements and accept them but I refuse to sugar coat their struggles and I want to honour them both for the way they cope in all the ways they truly suffer as a result of their autism.

They suffer from autism and I think other people need to understand that.






54 thoughts on “My children do SUFFER from autism and I think we need to understand that.

  1. I understand completely! My son also suffers because of his autism and I would never in a million years consider his autism dx a “blessing.” My blog is one that would never be embraced by Autism Speaks or the like! I live in a hidden world that no one likes to talk about! Great post!

    Liked by 2 people

      • Thank you Miriam. I am asking because one of the challenges I experienced as a teacher is how to reconcile the conflicting contentions and claims of many parents as well as individuals with autism themselves.

        For example, some parents believe that autism is a treatable biological problem while others consider it as uniqueness and part of neurodiversity.


  2. You are allowed to say whatever you want. I have put my foot in my mouth before by saying that autism is a disease and people don’t like to hear that too. But 80% of these babies have other medical comorbidities and as they are growing up we are finding that they are having shorter life spans and are more susceptible to chronic disease. I get it and so do many other autism moms too. And you know what just keep saying what you feel and someday other people will get it too.

    Liked by 1 person

  3. So glad someone feels the same as I do. I often say I hate autism I do not understand the people who say they wouldn’t change their kids if they had the ability wtf why would you willingly choose to have your kid suffer

    Liked by 2 people

  4. Thank god, someone who has the courage to come out and state the realities for a child with autism, this ‘its a gift’ nonsense is an.insult to those children who struggle to get through a school day.

    Liked by 1 person

  5. Thank you so much for your words. I am so tired of being told that I can’t really love my son if I don’t “celebrate” his autism, and that by calling it a disability, I am disrespecting those with autism who are verbal and able to say that they would not change themselves if they could. While I deeply respect each person’s right to feel the way they do, and it is certainly important to listen to those individuals with autism, they cannot speak for my son any more than a neurotypical person can. While everyone seems to agree that autism is a spectrum, and that if you meet one person with autism, you have met one person with autism, they can’t seem to apply that across the board when it comes to deciding what is politically correct at the moment. While someone higher functioning in the spectrum might embrace some of the gifts, my son, who is on the lower functioning end, suffers deeply from the deficits. He is 16, bored, isolated, frustrated and angry. He will never live on his own, marry, have a family or a job. Telling him that that is something to “celebrate” is like a slap in the face. The times when he is out of control and begging me to make him feel better (in his own non-verbal beseeching way) break my heart. I have had to be his voice his entire life, and no one can convince me that if he was Alice falling down the rabbit hole, and he saw a bottle that said “cure me,” he would not drink eagerly. What I find really disturbing is this movement that says that autism is a gift and not a disability, is that it hurts non-verbal people like my son, who cannot speak up for himself and say what he is feeling and what he wants. When I, as his voice, try to advocate for research into cause and a cure (or something, anything, that will make him feel better in his body), I am then shamed by the very community that we are part of. It is incredibly frustrating.

    Liked by 1 person

  6. Hi. I’m going to disagree. What you’re describing is a parent’s pain at the kind of extreme parenting I have also endured. But what also came to me, after time, was the realisation that my son was absolutely part of the normal condition of being human, albeit on the extreme limits of that bell curve of human neurodiversity. He remains non-verbal, not in full control of his bodily functions and can be very ‘challenging’ to people who are not picking up on non-verbal communication and who insist on forcing their demands on him. I adore working with him and others like him in the provision we set up (because shoe-horning him into existing services was nothing short of disastrous). I recall the pain. Own it, it’s yours. You are ‘entitled’ to it. Your children will find some things in life more difficult than an average child for the rest of their lives. They can also be happy and fulfilled. Sorry if that sounds trite. I do understand where you’re at. You are not alone and I hope you find some inner peace.

    Liked by 3 people

    • I have complete inner peace and the point of this was not ‘woe is me’ or ‘woe are my kids’ but to make people think about the fa t if we are always positive about something we are actually disrespectful to those who are struggling.
      My children bring me huge delight and if you read my other blogs you will clearly see they are amazing, but there is a balance and that balance is they still suffer from autism just like your son.
      I am so glad your son has you but what would happen if anything was to happen to you? He would then suffer by being misunderstood and possibly highly stressed.
      I agree some parts of autism are wonderful but not all of it is a gift.
      Thank you for reading and commenting.


      • I’m clearly not getting it, and have irritated you with my desire for your inner peace. Sorry about that! No annoyance intended from my poor choice of words, typed at speed, between a long list of tasks. I’m a little further along in life: my son is in his twenties, doesn’t live with me and is well supported, about 10 minutes drive from me. I actually get paid to run services that he attends. That cracks me up every time I think about it. We have everything in place so that his siblings can do their bit when I’m no longer around, although my single ambition in life is to outlive him. I actually like the straight-forward-ness of autism. It’s predictable and consistent, runs through his core. But [and this is where I think I can’t accept your point] if his needs are met there is no suffering. There is no pain or distress, no enduring, nobody died. I might just acknowledge disadvantage, but the reality is that he has been the recipient of more funding (education, social care) than my other three children put together, has a roof over his head and 24-hour care, all at the expense of the taxpayer, so at least there a little compensation. I’m not complaining. Yes, I lost my original job because of him. Yes, his siblings got very little attention. Yes, there were loads of things we didn’t get to do. Yes, it was exhausting. Unbelievably exhausting. But the impact was on those around him. His ‘suffering’ of sensory overload, for example, has always been temporary. He has learned functional communication, wears pads, trained those around him to meet his needs and has nothing short of a great life. I stopped reading forums/blogs a few years ago as I found it very negative. There’s always someone like me who’s going to disagree.You came up on Twitter, which is my favourite distraction, and where I’m going to disappear back to! Hope it works out for you.

        Liked by 4 people

  7. I am 100% behind u Miriam. Political correctness is taken to such an extreme is actually taking away our freedom of speech. Thats a big problem. Skye suffers and struggles daily and truth be told if I could take her autism away I would. God forbid we say this cos ppl condemn us and say we do not accept our children. I accept Skye with all my heart but I despise seeing her struggle on a daily basis. And with so many things that seem so small and insignificant to most. I love my daughter and want the best for her but like u say they absolutely suffer due to autism. All of our kids do in one way or the other and thats the reality. I have no idea why ppl would be upset with this reality.

    Liked by 2 people

  8. My son has Autism but can function and speak but it’s delayed.
    I sympathize with you when he was 3 he constantly had sensory overload constantly.
    People were horrible at parades,stores but especially schools teachers principles they acted like he was ruining there perfect school.

    Liked by 1 person

  9. Your insight is amazing on this topic and I fully agree with you. I, myself have autism as well, luckily on a very high functuoning level similar to PDD-NOS, and understood what you meant by the title alone. It is something that can be very daunting for both parties involved. In a lot of ways, I consider having autism very similar to, if not fully, having mental illness because, in your son’s case especially, we aren’t always able to, if at all, say how we feel or what os bothering us. I give you a ton of credit for trying to be the best mom you can be for them. Its never easy dealing with this kind of disability but I know you are doing the best you can to provide for them.

    Liked by 1 person

  10. I think they are unlucky and I pray every day for cure and comprehension. As time goes by I am in awe of them as well, as the realisation of how they cope, and how they learn to show us things unravels.


  11. Oh my gosh!!! I have always felt like this. I have just been lectured on saying AUTISM SUCKS. And it does . Thanks for sharing this story. I couldnt of said it any better. Its too much to wrote in words but u nailed it!! Thanks

    Liked by 1 person

  12. I agree with this before I even read it ..all these little posts about magic and really wanting the ability well maybe..but as a mom I see the tears the pain with sadness, I see that everyday, I feel that every day.I’ll tell you right now my baby struggle that’s real, and it’s my job to keep it real and to find him help and to keep him safe and I’ll do anything to make sure that’s the case. That’s why I hold him so tight !!That’s why always be there!! that’s why I trust no one, I am his voice and protector, his best friend, his shoulder, his everything and him mine.

    Liked by 1 person

  13. Thankyou so much for sharing your thoughts so eloquently and movingly. You may have ‘alienated a whole community ‘ but, by the same token, you will have empowered and given a voice to many. I am a homeopath with an interest in working with children and families who are living with ASD and other challenging diagnoses and I am constantly saddened by those who react to the idea of such therapeutic interventions as being an assault ( insult even ) on their identity or that of their children. This often alienates those who would like to try such interventions, which I know, in the case of homeopathic treatment and other forms of treatment can go a long way to alleviating the life limiting and distressing aspects of ASD eg sleep disorders, eating disorders, anxiety, bedwetting to name but a few. This in turn improves the quality of life of the children and their families. Yes, there can be aspects of ASD that can help us see life differently and that may be no bad thing and even sometimes , a gift, but for those who do not face the daily challenges you describe so well, to deny those who do through denigration is a source of great sadness and frustration to me.

    Liked by 1 person

  14. I dislike autism big time, I love my child with all my heart. Of course I do not want him to suffer, I dont agree with people that said: ” you have to accept them like that ” well, not me, I am trusting in Jesus who paid for all our enfermities in the cross, givig my child natural supplements, footh baths which are detoxing him, expecting miracles, holding in Him!

    Liked by 1 person

  15. I completely agree with you. For those severely affected, autism is not something to be celebrated or to show pride in. It’s a disability, especially if the severity is going to require lifelong care. It’s frustrating that ASD is such a huge spectrum. You can’t begin to compare a high-functioning “aspie” with someone severely affected. My 8-year-old son is like yours – nonverbal, behavior problems, severely delayed, etc. I’m not afraid to say that he suffers. Thanks for your post!

    Liked by 1 person

  16. And when one child is afflicted with autism, the second, third or whatever child that doesn’t have autism also suffers, because autism is 24/7/365 event affecting all members of the family and close circles, including school and church and entertainment establishments. In fact any where with anyone who is in the close confines of me and my family life, all are affected.

    Liked by 1 person

  17. Right. They do suffer. But they do not suffer from autism. They suffer from society. If their environment were better suited to them, if the expectations put on them were different, then they would not suffer. You missed the entire point of the social model of disability, which is what all of the actually autistic community have been trying to explain. Listen to those who are actually autistic because they are your sons and daughters. It is their voices that carry authority, not yours. You are on the outside looking in and you are doing a disservice to your children and the entire community by not listening.

    Liked by 2 people

    • Thank you for reading and commenting. You are free to disagree as we live in a free society but I stand by my opinion and as a parent I have every right to write from my point of view too.
      Just for your information lots of autistic people were delighted at this post.


  18. While I understand your concern and love for your children, I have to respectfully disagree, There is a difference between the Autistic brain difference and the co-morbids that can come along for the ride. I am Autistic, and I have anxiety. Many people with anxiety are not Autistic. And yes, I may suffer from this co-morbid, and I wish I didn’t have it. But, I would not wish to be “normal” or to be “cured” of my brain difference, whatever that means. I believe we should, instead, aim to lessen negative symptoms of co-morbids.

    I’m not diseased or afflicted. I don’t believe your children are either, You just have an expectation of a “normal” childhood you can pat yourself on the back for, but the reality is your expectations are hurting them too. They feel your disappointment. Believe me, I felt my parents’ too. It’s horrible and triggering to feel you are a disappointment. It only makes it worse. Acceptance and letting them be who they are will help them to take their guard down from you.

    Food for thought: How would you feel if this were written by your mother about you?


    • I would not be hurt at all if my mum wrote this about me. Rather I would be delighted she was bringing my suffering to the attention of others!
      We are entitled to different opinions and I will not debate on my own blog. If you wish to write yourself you are few to do so.


  19. I am autistic. I see it a bit differently, in that I think neurotypicals suffer too in different ways through being neurotypical. For me the gifts of autism are my creative brain, my intellect, my ability to find great solace and joy in a simple pattern, to self soothe with a stim, to be able to be instantly comforted by things like soothing lights, weighted blankets, white noise. I don;t need social input as much as other people do and am happy when I am not in a relationship so have never agonised over finding Mr/Ms Right. I have also suffered terribly over the years with extreme self harm, eating disorders, depression and anxiety meltdowns and hospitalisations. because I wasnt diagnosed until I was 41 and no one knew what was “wrong” with me. I was trying to be neurotypical and failing horribly. Once I found out I was autistic I learned so much about how to deal with and minimise painful sensory input, how to celebrate my strengths and not to mind being different. Personally at times I suffer, particularly with any sort of overload, but everyone suffers in life. I have support though not constant as some may need- I have eight hours support work a week, plus two hours therapy and attend groups I have never been able to work. I am very happy with my life and glad to be autistic now I’m not measuring myself against a neurotypical society. I will say the executive functioning problems cause me difficulty as do language problems and exhaustion from socialising. The stress you describe your children describing in school comes from that environment not from their autism as if there were a school set up for autistics or they were learning at home on their own, they wouldn’t be stressed by transitions etc- I think that’s what some people are trying to get at. Everyone gets so angry in these discussions it becomes unhelpful which is sad. Stims like flapping don’t cause suffering, it’s others’ judgement that does. Flapping can be a great release. I haven’t posted this to argue with anyone, I’m trying to say it’s not black and white, even though we autistics tend to see things in that way and so also do neurotypicals often. Thank you.


  20. Miriam, I have just found your blog and am looking forward to reading more. My son has a dual-diagnosis of Down syndrome and autism spectrum disorder. The ASD diagnosis is recent, and I am just beginning to learn more about it and how it affects him. I appreciate your comments here because it is similar in the Down syndrome community: people are so anxious to paint Down syndrome in a positive light that they downplay the challenges. Thanks for sharing.


  21. Everyone has difficulties and faces challenges and we need to accept them. Pretending that ‘all is great’ does not help anyone. Generalising is not the answer and the first step to stereotypes and prejudice. Autism is a spectrum and person A will have a different experience to person B and person C. For person D to say that ‘autism is a blessing’ is valid for that person and for many others, but not for all. I have got fibromyalgia and one of the things in common with autism is sensory overload. Wearing watches and jewellery hurts my skin, people talking loudly on radio hurts my ears and head and if I leave a label on clothes my whole body seems to condense into that little itchy spot. On the positive side, my hearing and my senses generally are very acute. But the pain still sucks. Does it upset me that my son potentially feels something similar? Of course it does! And I make sure to avoid noises that he finds upsetting for him or prepare him that something noisy is about to happen. My son finds it difficult to make friends but wants to have friends. I can’t call that a blessing. I can help him to make friends and maintain friendships. I can’t stop him from ‘measuring himself’ against others and being upset because he perceives difference. He will probably learn in time to appreciate difference but that process is bound to be difficult. Yes, we need to accept autism, but we need people to understand he challenges people on the spectrum face. Too much positivity is not helpful. We also need to apprecate that older people have knowledge and insight that younger people don’t have. We need to accept immigrants but should not forget the hardships they may have faced and might still face. We need to accept the person in front of us for what they are as an individual and appreciate their strengths and be aware of their challenges, assisting them if they signal to us that they need assistance. Every human is vulnerable and faces challenges and only if we accept that without negativity can we move towards a compassionate and caring society where people with ASD can flourish.

    Liked by 1 person

  22. If I could take away my son’s autism and make his life easier I would do so in a heartbeat. I’ve sat in rooms with parents all swearing blind they wouldn’t change their children for the world and I don’t understand it. I don’t mean I would want a different child but if I could take away the anxiety, distress, incontinence, anger etc and make his life easier I would do anything. Apparently it is not politically correct to think this, it doesn’t mean I don’t love him to distraction it just means I want to make his life easier. In reality I know I can’t and I accept that this is how he will always be and I love him, but if someone offered me the chance to fix him (and yes I would see it as fixing) I would do so.

    Liked by 1 person

  23. I am the grandmother of an 8 year old non verbal grandson. He is loved and cherished in his family and by many care givers but, it is obvious to me that he is indeed suffering because he is locked in his own world.

    Liked by 1 person

  24. As an autistic adult and an advocate and even performer, I deeply value this blog and the things written here and will carry on with these words in my mind. I have heard and learned and thank you all x


  25. I know this is 2 years old but I really want to comment anyway because I’m a teenage girl with asperger’s. I’m “high functioning”, I don’t really suffer the way your children or other people might, but I have been through depression and loneliness, because I am so useless in social situations and I don’t really have friends, and I really think that I am suffering in my own way, not because others don’t understand me or anything like that but because I have an illness. And I think saying autism is not an disability just a different way of being doesn’t help at all because it can cause real pain, physically and psychologically. It seems that nowadays everyone needs to be politically correct – my family is very liberal but I think it goes to far sometimes. Thank you for writing this, I hope you and your kids are doing fine.

    – Some random kid from the internet

    PS English is not my first language so please forgive any mistakes

    Liked by 1 person

  26. Correction: your children do not suffer from autism. They suffer from the disability inflicted on them as a result of being on the autistic spectrum whilst living in an autism hostile world. I know what I’m talking about because I have the exact same disability; I’m an autistic person living in an urban environment. You will never know the extent of my pain caused by an emergency vehicle racing down the street I’m walking along with its siren going full blast.

    Liked by 1 person

  27. The issue for me is what anyone means by autism here? I am a diagnosed autistic adult and I can understand how the children referred to here may suffer due to their autistic natures being at odds with the world. It is clear how much support is lacking in peoples lives. How it’s right in front of so many of you, that your children would be better off without their autistic natures.

    However, I ask that we all beware of the frame of reference initially addressed. The autism is a gift/blessing trope is merely an attempt to give people a positive experience of being who and what they are. No it is clearly not appropriate for many autistic people in the way it may be for me. But everyone here loves their children and wants them to be happy.

    Could we start again and acknowledge that there are different communities of people in the greater autism spectrum world, and that they’re natures can be seen as having different affects on their lives. There are the severely mentally disabled for whom life is relatively a battle compared to someone like myself. There are people who see themselves in between such experiences, and so on.

    It seems to be very important that many autistics and parents alike, acknowledge that their lives are unhappy and that they suffer all the time due to their autistic natures. I think it’s equally important to acknowledge that there are many who feel differently. That it’s always going to be like that and in no ways does this diminish anyones pain and suffering. It’s all individual cases and people. Individual families and children. Good luck every xxx


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