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

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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.

Dictionary.com defines ‘suffer’ as:

verb (used without object)
1.to undergo or feel pain or distress:
2.to sustain injury, disadvantage, or loss:
3.to undergo a penalty, as of death:
4.to 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.

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39 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 1 person

      • 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.

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  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 1 person

  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 1 person

    • 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.

      Like

      • 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 1 person

  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.

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  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

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