Autism, We Have a Problem – Let’s Talk about Stigma

We’ve got a problem. With the way autism is represented in the media.
Parents of autistic children are fed stories that “autism is a horrible tragedy that will destroy lives, families, & marriages”. Big organizations and people have made lots of money spreading this mis-information, drowning out autistic voices who speak up against them.
There is real damage done by well meaning parents, determined to rid their children of their autistic nature. Imagine if your parents were determined to reshape your entire identity because your natural way of being has been deemed “socially unacceptable”.
Autism is not a tragedy it is a difference, despite what most of the world has been led to believe. Autistic people are not broken or in need of fixing.
When parents get divorced, people tend to remind the children that it’s not their fault their parents are separating – because  this type of blame would not be good for a child’s mental health. How is blaming a child’s autism for running a marriage / family any different?


See the video HERE on YouTube.

26 thoughts on “Autism, We Have a Problem – Let’s Talk about Stigma

  1. I think the problem is that the autism spectrum is so new. When I was younger “Autistic” was reserved for just a few severly disabled indvididuals. Even when I was studying and practicing with my master’s degree 15 years ago – “autistic” was still just a diagnosis reserved for a very small popuation. I think providing more information and awareness of the autism spectrum is important – especially people still working in professional roles. I have had many issues with practicing speech therapists, elderly pediatiricians, etc that are still looking at the DSM-IV autistic disorder definition. The parents or caregivers that I know are trying more to help their kids alleviate painful symptoms. Lack of sleep, aggression, self-injurious behaviors. Some are trying to help their child find speech – not get rid of their autistic nature because our children are really peaceful and loving – pure heart. I have two kids on the spectrum. My daughter is high-functioning and gets very little understanding or support – it is so very easy for teachers or other adults label her as a challenge instead of challenged. And I let her do her talking until she asks me to help – which I will do as her primary support. My son is unable to express himself – he doesn’t even know he is on the autism spectrum. I am his voice until he can find his own way to talk about what he goes through. Autism is not a tragedy to me or my family. I have read a couple of blogs of parents with very low functioning adult children &/or young children. They were tired and frustrated. One was especially tired of reading blogs like mine, or going to their parent support group, where the children could speak – because someone like me, and everyone in their support group, had no idea what she was still going through with a low-functioning, non-verbal adult child. And I don’t. Because the autism spectrum is so wide, I can only speak of the autism in MY family. My daughter can only speak of the autism she experiences.

  2. Having children with additional needs does change a family dynamic. I don’t think it’s the autism that can break a family but I think it’s how we, as parents react to the diagnosis, the different challenges and finding new ways to do things. Society presents us with a dream so when we get a child who is different it’s a shock. It’s not what we’ve believed in. And coming to terms with that can take a while as you have to change your thinking. For example my youngest son has anger issues which I can understand as he is frustrated with his limited language. He isn’t being naughty so I have to teach everyone how to deal with his behaviour as it isn’t the same way as dealing with a neuro typical child. And people judge, think your being soft and some people don’t have a thick skin developed straight away to shrug off social norms.
    Shows like atypical and the a word I don’t think are blaming the child. In atypical, she had built her life around her son, you have to go some extent when you’re a parent. As he was growing and wanting to do more on his own, she felt lost. She was losing her purpose, she felt redundant so stupidly looked for validation from a bartender. It’s her actions, her responsibility. My job is to raise my kids to be as independent as possible so as I get a bit more freedom I fill it with hobbies that I put on hold.
    My sons hardly sleep, have no language, and a spontaneous day out is a no no. It’s naive to think that parents aren’t under extra pressure when you have a child with ASD. Relationships can fail but for a multitude of reasons, and I would agree it’s not the child that causes the break ups it’s the refusal to change your world that does. Will I ever celebrate my sons autism? No. will I celebrate my sons every single day? You bet your arse I will. They are mine, they’ve changed me into a better person, they’ve shown me a different way of seeing things, I’ve learned new skills, I’ve learned to find patience when I feel I have none left. We have found a world we can share. My husband isn’t where I yet, he’s a fixer and he’s having a hard time. Will I give up on him because he finds autism difficult? No. we will make him see the world we share and how much fun it can be, I’ll try to take some of the fear away. We worry about our kids being bullied and finding life hard. As parents we are supposed to make it easier and we’re not perfect but we try our best.
    That’s all we can do

    1. Anger issues or meltdowns? There’s a difference! Also, the tv show mentioned doesn’t clearly state your observations and makes a negative impact despite it’s good intentions because of this. Please listen more intently to us -autistic- people! Another thing I’d like to point out is that there’s many thousands of autistic people in our communities who don’t know they’re autistic due to social stigmas and neurotypicals not telling us things directly plus services and support largely vanish for autistic adults, many of which were diagnosed at age 40, 50, 60. I was recently diagnosed at 28 despite having five hidden disabilities all together. You have enough representation with Autism Speaks which ISN’T a organization that has the future of autistic adults in mind.

      1. I know about the lack of adult services, my eldest is 24 and trying to find him anything is one fight after another. Children’s services were much better but once he reached 18 his speech therapy stopped, no social worker assigned and nothing really on offer after school finished for him.
        My younger son has anger issues as well as tantrums and meltdowns, one learns to spot the difference and deal accordingly.
        I know about non-diagnosis and late diagnosis too, my eldest daughter chose not to go the diagnosis route as did my brother probably due to the stigma or maybe they don’t want the label.
        On a final note, I’m all for bringing autism into the mainstream, as I am about mental health issues and other so called taboo subjects. It causes much discussion and more openings and chances for everyone to learn. I can only speak as a parent, but as I’ve said before I don’t think I’m infallible or know everything, which is why I read others perspectives and enter into discussion with them. There’s always a chance to learn something new.

  3. My middle son, who is 10 years old, is autistic. I wouldn’t say it’s severe, but it’s there. I admit I have a hard time relating to him. I think it’s partly because I don’t fully understand what autism is. My wife, on the other hand, relates to him very well. He has come along way over the years. He used to act out a lot more like growling at people, hiding under tables, and completely removing himself from social situations. Now he is much better in all those areas. He is actually a very smart kid, very inquisitive. He likes to as Google all kinds of different questions. He definitely sees the world from a different point of view. I see your point about trying to ‘fix’ someone’s autism. It really isn’t something to fix, but learning how to understand and relate to that person, like my son.

  4. great perspectives here. we went through this stuff when our son was diagnosed and my sister was always looked at a problem because she was nonverbal and couldn’t express herself, but i knew how she felt a lot of the time because i was on the spectrum – i just camouflauged it better because i was verbal (and learned to fake it thanks to theater and communication classes,) which in itself is dangerous and is a symptom of a neurotypical society that wants us all to integrate like little round pegs. Thank you for sharing.

  5. My son was diagnosed with high functioning aspeargers about 5 years ago. He teaches me so much with his out look on life. It’s annoying when people ask if he’s going to grow out of it.

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  7. This is interesting. Thank you for sharing this. You are a very smart and likeable woman. And the other day you shared with us your first reading memories which I found lovely to read. The thing is, there is more to autism than just high functioning people like you who develop into inspiring characters. That’s why they call it spectrum disorder. Maybe those cases you read about are less autism and more “something else”. If my kid were just socially different and sensorically challenged it would not necessitate “change”. But there’s more. There is impairment to development. Many of these children have it. To the point where you can say it’s a disability. My kid doesn’t talk properly. And my kid was at no point in life so far ready to have a book read to him. And it’s not character. Or nature as you will… these are the bits that moms like me fight for. OK, I admit, there surely are those who are extra picky and want the perfect sociable child.

    You fight for acceptance of autism. Which is honourable. But please take a moment and meet those kids that get the diagnosis nowadays. Maybe it’s not the same autism like yours. There’s an explosion of autism diagnoses and maybe the reason is that many are not autism at all, just something similar. Who knows. I think that there’s more to autism (Asperger more like) than just high functioning grownups which I find extremely likeable btw. I still consider myself Asperger at times. But I was a normally “functioning” kid. I went to a normal school. I was just weird. If all goes at the speed it goes right now, my child will never go to a regular school.
    Nobody wants to change you. At least I like you. Please don’t take these stories personally.
    I hope I didn’t offend you… I really tried not to. 🙂

    1. The explosion in diagnoses of autism is because of adults who were able to cope well enough to get by before now. It is the adults who, now that we know more about autism, are being identified as autistic. It’s those adults who now have a reason to apply to all their behavior that they or nobody else understood prior to a diagnosis.

      Autistic children grow up to be autistic adults, and then have their own autistic children. We autistic adults advocate for ourselves and any other autistic person who can’t advocate for themselves.

      And by the way, we are only “high functioning” because we’ve worked our tails off to be able to mask better and “get along” in a neurotypical society. We work harder just leaving our houses than most people do in an entire day.

      1. Tim, you make such a good point! As an Aspie in my 20s, it feels like no one understands when I don’t act neurotypical or have different needs. To quote my mom: “Everyone talks about children on the autism spectrum…but children grow up. What, do they think it just goes away?”

    2. Autistic people who can pass OFTEN do so because they’ve had the autism beaten out of them (sometimes literally). When you say someone’s high functioning – you have no idea what the human in front of you has been through.

  8. I feel so fortunate because I have an amazing mother who has always accepted me for who I am. She always advocated for and helped me when I needed it. I’m sure raising a child with Asperger’s wasn’t easy, but she’s always seen me as a person, not just a diagnosis. I thank her every day for that and wish more people could be the same.

  9. I don’t have a lot of tolerance for stigmas…. whether it be in relation to autism, ADHD or depression and anxiety….. most stigmas I find are such an injustice to the people who may live with these things….. time to eradicate all stigmas I say….

  10. I have an autistic child as well, he always fall in the gray area of the autism spectrum because it’s so broad. It’s so difficult with the school system as for what he’s qualify for. He’s such bright kid and he tries his best that makes me happy but want him to get the help he’s due.

  11. When I talk about my son’s autism (or my own) I try to make sure I talk about the great things about autism as well as the challenges. My son is the happiest child I’ve ever known despite his social and sensory difficulties. For me, it’s not my autism that is the problem. It’s anxiety caused by years of trying to fit in and it’s the attitudes of other people – the kind of people who hear the word autism and think autism equals mass killing spree. I can deal with my autism just fine because it’s who I am. Ignorance though? I struggle to deal with that.

  12. I don’t really know much about autism, and don’t know anyone that has got it, at least that I know of. I think it is very interesting that sometimes people that have this, while struggling very hard in some areas of life, get excellent in others.

  13. I have a high functioning 10 year old and we found out late when he was 7. Though the signs were there in his earlier age, I knew nothing of it but the fear of it. So when he was diagnosed I cried everyday for 6-7 months. Yes we got the answers to our million questions on whys, but when the truth is revealed its just as paralyzing. He is moderate so to society he is “Fine”. But the second I open up about it, I get the stares and then I have to battle them as to them saying “he don’t look it!”.

    People view it as visual retardation of some sort.

    People beed better educated an not the false assumptions of how they look and act. Not 1 ASD child is identical. The spectrum is big now.

    Good article…

  14. That is totally true and it is even worst in Africa specifically Ghana where I come from. The sad thing is we seem so far behind in helping those on the autistic spectrum

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