blue lights won't help me Hello Michelle Swan

blue lights won’t help me

It’s April. I’m probably supposed to say “Happy Autism Awareness Month”, but I’m not going to. Being autistic in April is hard.  I don’t need you to display blue lights for autism awareness. I don’t need you to be aware of autism. Honestly. I don’t. I just need you to be  a decent human being who is concerned enough with the rights of all people that you will listen when I say:

I am not a “person with autism”.
I’m not broken.
I am not a piece of a puzzle waiting to be solved.
I’m not a less than perfect version of a normal person.

I am autistic.
I’m happy.
I am valuable.
I am whole. Just as I am.

Autism is not a negative thing. Being identified as autistic has given me an understanding of myself that was not possible before. It has given me a community of friends who understands me, my strengths and my challenges. It has allowed me to recognise my needs and gain confidence in finding ways to have them met.

There are many autistic people out there who are like me. We don’t want much… just to be accepted as we are, and for people to be willing to make a few changes that will help us participate more fully in society. We’d rather you spend your “Autism Awareness” blue lights fundraiser donation money on making the world more accessible than on figuring out new ways to keep us separate from the world.

Yet, for some reason the brigade of “autism parents” and “professional experts” are going to spend April trying to get you to  believe that we need segregated schools, jobs, and housing. They want us in therapy to make us look more normal and so that we don’t get bullied. They aren’t all that interested in acceptance of diversity, valuing all people, meeting everyones needs, and teaching bullies the social skills they need to act in socially responsible ways. They’ll want you to agree with them that we’re better off with our own kind, and that our families need breaks from us to help them cope with the burden of caring for us.

It is a strange thing to know that usually they want you hidden away so as not to inconvenience anyone, but this month you are welcome in public as long as you are prepared to be presented as a tragedy story.

The reality is, we are here in the community already. Learning, working, loving, raising families, contributing. Often we are living next door to you and you don’t realise. And, yes, we were just like those autistic kids they use in their fundraising campaigns. Yes, we are disabled. But that doesn’t mean we can’t live full lives.

We are people, just like you. We have the same rights as you. Our lives are as valuable as yours. Our needs and wants are just as valid as yours.

So, while the world is busy getting “aware” and raising money for non- autistic run charities to try to figure out ways to cure me of being myself, I will be over here, engaging in my favourite repetitive self soothing activities, indulging in my special interests, eating my predictable restricted diet, and fixating on topics I am obsessed with. Stimming,  self-caring, learning, advocating. In other words, I am going to spend April the way I spend every other month- being happily, proudly autistic and fighting for equal rights for all of us…..

…. and blue lights wont help me with any of that.

35 thoughts on “blue lights won’t help me

  1. While I totally understand why you feel the way you do, please understand that Autism Awareness and Acceptance is still needed. While my family lives in a community that is pretty accepting of our son, too many people still stare at him in public and think, if not say outright, some pretty awful things. No we don’t “light it up blue”. I hate those people. I hate the “cure” mentality, as if my child should be something he isn’t or that he should even think he needs to change to fit what society expects of him. Makes my blood boil. But getting to acceptance means we still need awareness activities and a spotlight on why our families need help.

    Many of our kids/adults are not as functional as you. Mine needs therapy just to learn how to wash his hands and develop skills so he can get and hold a job as an adult. That will take years of skill building. I could care less if he ever earns a living wage, I just want his adult life to not consist of being at home or out on a hike. He loves being with all sorts of people his own age, that is what we work on — and frankly,that is what we raise money and awareness for.

    So please don’t lump us all in with those who focus on raising money to “cure” you or put you in a separate setting. That is NOT our focus, nor will it ever be.

    1. #notallautismparents
      patronising assumptions about the functioning level of the author

      Yep, just another day in “Autism Awareness”!

    2. Hi Leslie,

      while I understand why you might feel defensive, if you aren’t like the parents I refer to in my article, then I’m not talking about you, so no need to worry that I’ve lumped you anywhere.

      As for your assumptions about how functional I am… well, there’s a bit of irony there don’t you think, given your obvious aversion to lumping? I don’t engage in contests over who is most disabled, but I will just point out that from reading one article on my blog you have no way of knowing how well I function in any situation other than how well I communicated my thoughts in this one article.

      And to address your comments about acceptance and awareness I’ll just say that aiming for awareness gets us to … awareness. Aiming for acceptance achieves awareness on the way, and hopefully gets us to a point where autistic people don’t have to justify their words to parents who assume things about them when they read something they don’t like.

    3. Hi Lesie! I’d like to introduce you to a nonspeaking autistic called Lisa.

      She is working as a software engineer, and she’s good at what she does. She still needs lots of daily help and 24/7 supervision (including while she’s working in another company’s office building) so that she doesn’t hurt herself. She lives in a private home with other disabled people, who all help in the ways that they can.

      She’s over at
      (click on the link that says lysik’an babbles)

      I recommend you look at her blog so you can see that there are more options for your son than being in a “home” as opposed to being fully independent. Hope you like 🙂

  2. I’m autistic, and I couldn’t agree more.

    ‘I am not a “person with autism”.
    I am not broken.
    I am not a piece of a puzzle waiting to be solved.
    I am not a less than perfect version of a normal person.

    I am autistic.
    I am happy.
    I am valuable.
    I am whole. Just as I am.’

    I have been telling people this since I got my diagnosis three years ago, when I was 50.

  3. I’m an adult going through Assessment for Asperger’s, I think Awareness should be happening everyday and I spread this via my blog throughout the year as my eldest child is also going through ASD assessment. I must admit I’m getting overwhelmed by seeing all of the ‘Light it up blue’ stuff in America that is cascading over to the UK

  4. Wihout therapy, my son would never have walked. Without therapy, he wouldn’t be learning to communicate his wants and needs to people outside his immediate family. Without therapy, he may very well not have the opportunity to live the “full life” you seem so proud to have achieved. We have, and will continue to, find all the support available so he doesn’t have to be “segregated in schools, jobs or housing”. But as it stands, without awareness and fundraising for NFP organisations that provide these supports, my darling boy would not be able to live and enjoy his life to his fullest potential. And now that I’ve written all that, I don’t even know why I bothered. This article is actually just another version of “mummy shaming” and I’ve been suckered into responding to it. ?

      1. When you preface that with multiple comments how autism is not a negative thing (when it can most certainly have negative impacts) and follow it with things like “better off with our own” or “want us hidden away”, yes. Your whole view on “they/them” is quite obvious. You might be an autistic adult but maybe, just maybe, things have changed a little since you were a child so quit making assumptions about “them” (me), what we do for our kids and why we do it.

        1. Of course I don’t assume *every* parent is the same…. If you aren’t someone who does the things I’ve described, then this article isn’t about you, is it? So why so defensive about a person that this particular awareness campaign affects speaking up about how it affects them?

      2. I must remind all there is a wide range of persons with autism. I can see where several might see a different perspective regarding this article. My granddaughter is non-verbal, an I will still give support to not only the awareness of autism, but also any aid that may help me, her parents, an siblings to have a form of communication, where she can become the best she can be.

  5. Any type of public health and rights (because lets face it we are talking about inclusion and human rights) campaign should start where it means to finish. The goal should be inclusion and acceptance, that is the core message that should be shouted from the rooftops, Awareness is tokenistic and prone to shallow meaningless activities that people engage with once a year. Meaningful engagement with government across all sectors of the community in order to achieve structural change is what I want for my son, not a shitty blue light bulb.

    1. Me too, Jess. It’s not a one month year job to see the changes we need to achieve real acceptance and inclusion. As you know, there are many of us working at this all year… April is so frustrating. Particularly when parents of kids who will grow up into the community doing that work want to have a go when we challenge the dominant discourse.

  6. Thank you for expressing yourself so wonderfully. I have a 10 year old daughter with high functioning Autism and I hope she grows up to be as self assures as you are, not many people are no mater if they have a dignosis or not. I try my best to understand her way of seeing and understanding the world and teach her in that way. She is in a regular classroom and we have been blessed with great teachers and classmates who love her for who she is quirks and all. You keep being you. Let’s just hope the blue lights help people to realize we are not all the same and to respect that in others rat her than judging it.

  7. This is complex. It sounds like you are living a full life as a part of your community and that’s wonderful. However, in the UK we still have 3,000 people with autism and /or learning disabilities living in inappropriate hospital settings. We still have thousands of people with autism or learning disabilities who rarely leave their house and who don’t have a single person in their life who is not paid to be there. This tells me we need more funding, more community services, more investment in creating opportunities for autistic people to be involved in their communities. I don’t see how we can do that without increased autism awareness, how can the public support a cause they don’t know exists? Awareness can do wonderful things.

    1. Hi Helen,
      you are right that there are too many people living in situations that are unacceptable. Yes, more funding is needed. Yes, more opportunities need to be created. But those things can be achieved by taking an ongoing human rights advocacy approach in which we strive for understanding and acceptance through education of non-disabled people. “Awareness” campaigns once a year do little to help achieve the things that autistic people really need. As they are run now they too often focus on the struggles of the family and of making autism out to be a tragedy, when in fact the real tragedy is how autistic people are perceived and therefore treated.

    2. The aim of ‘ awareness’ seems to become a catch cry that hits the News every April… In my opinion the money promoting could be better spent by ” accomodating ” the needs of the actually autistic people.

      As you say Helen practical needs in UK have not been met … this is the case in most countries.
      We don’t need pity we need to have our human rights addressed in practical and meaningful ways.

      A month of promoting a single autism related issue e.g. training programmes for parents and carers that are Devised and Led by autistic adults.
      This would help address the needs of autistics in residential care and those living within the community.

      Dithering around, steering clear of the hard core issues will not achieve anything .

  8. I am an autism patent but not an “Autism Parent”. I blog about raising my son and learning how to integrate autism into our lives. It’s our job as parents to teach him how to understand the world and to teach the world to understand him. Autism demands a heck of a lot from a mind and a body; anyone who has been around an autistic person regularly knows how tiring executive dysfunction and sensory sensitivity can be, how draining the allistic world is and the stresses society places on autistic people. Allistics should be taught not to expect autistics to “pass” and suppress their traits but instead to understand them and make accommodations that reduce stress. My blog attempts to spread awareness and teach acceptance to this end.

    What use is awareness unless it changes anything? Purchasing a blue light bulb, even running a fun run or hosting a coffee morning to raise donations is nothing more than misguided good feels or tokenism unless real practical change is made to the lives and futures of autistic people. Raising money for vital resources is important, absolutely, and we have to start somewhere, yes, but we really need to be moving swiftly on from there. Why are only 16% of autistic adults in full time employment in the UK? Why are only 30% in part time employment? This is what awareness should be about. Not “do you know what autism is?” but “have you asked autistic people what they need and want?” What use is training my son’s teachers how to bring out the best in him if he can’t find a suitable work environment or an understanding boss when he leaves school? We need political understsanding and social change to show people what a waste of autistic lives the current system is, devaluing and patronising autistics as it does. One month of blue branding just won’t cut it.

    As it happens I am on the diagnosis pathway myself, having recognised so much of myself in my son and after having spoken to autistic adults and found a lifetime of similar experiences. I’ve just been referred to an adult autism diagnosis service. We’ll see what happens.

    Just remember while we’re raising awareness, April or otherwise, that we make sure we listen to what autistic people themselves are saying. After all, this is supposed to be for them, isn’t it? If they are saying “Light it up Blue” is pointless and insulting to them then we don’t get to tell them it isn’t.

  9. I’d like to comment on the dichotomy parents vs. adults and on the difference between two kind of autisms because I think there is a misunderstanding (from both sides):

    In the [Dutch] autism world, some people out there are still thinking there are two groups: Care givers (parents, doctors) and patients.

    Care givers make decisions for the second group, the patients. They also get to sit on the board of national autism committees, foundations or publications, where decisions are made for the patients.

    This vision is flawed for two reasons:

    1. If your kid is autistic, you and/or your spouse as well! How do you like being called a patient, now? Don’t worry, just read further.

    2. An autistic person isn’t a patient unless he has a syndrome. Examples: Rett, Angelman, fragile X, acquired brain injury, etc.

    3. I think it’s a misconception to classify non-syndromic ASD as a disease, worse even: one which should be cured.

    4. So, dear parents, therapists and other important board members, trying to raise awareness and considerable resources to fight autism. Stop that.

    You shouldn’t want to ‘cure’ being autistic, neither being black, gay or transgender btw, and you certainly shouldn’t want to be able to abort, murder, or euthanatize autistic beings, neither black, gay etc.

    5. I really hope they will be able to develop therapies to treat syndromic ASDs, I however think there is a big difference between pathology-based autistic traits and hereditary expressions of neurodiversity. The former are monogenic, the latter not. Why then consider them as a whole? Anyway there are many other conditions which produce autistic traits (Acquired brain injuries, for example). You can keep trying to push a square into a round hole, or you can spare time and money for where it really matters: Rett, Angelman, fragile X syndrome, etc. Don’t you think?

    P.S.: Being (non-syndromic) autistic is just .. being different but anyway: We are all different.
    Don’t worry, they’ll get used to us, just as they did with mute, deaf, blind, black, gay, short, big or old people (did I forget someone?)

    1. Hi Kamil,

      sorry it took me a while to pass your comment through moderation. I needed to read it many times before I felt I understood it and I wasn’t comfortable having it visible on the site until I did. Thanks for understanding.

      I can’t say I agree wth your full thought process here, but I do agree we need to stop medicalising autism, and that it is important that the attempt to push a square peg into a round hole is damaging.


      1. Hi Michelle,
        Thanks for having taken the time with my message. I find it difficult to explain but with time and help it will get more palatable. See, most of dsm entries are based on their history, how we saw things back then. These concepts are therefore a compromise between our past visions and the current, so in the case of autism the gap between what we thought it is and what we now know is rather widening.
        Examples: Adhd and autism seem to be expressions of the same thing, but in acquired brain injuries as well (?!) And then you have classic autism, which looks like the most severe forms of autisms but from which children can grow out to be individuals like Temple Grandin, wow!
        That is why I think parents shouldn’t distance themselves from older autists like us, and reciprocally. We have common interests, as long as people can start seeing the difference between what’s a genetic and/or acquired pathology, and what’s just being different (but that’s my opinion, at this moment).

    1. It’s about autism awareness campaigns and any group or individual that uses them to portray autism as a burden and/or tragedy and who refuse to listen to autistic people when we talk about our lives and what we need to live them well.

      1. Well said, it’s as absurd as running a LGBT Association without having any gays or transgenders on the board.

  10. I’m 42 and Autistic, I work as a Physical Therapist and I have the following opinion on ‘awareness month’ = no thanks.
    I don’t need people to get a superficial and vague idea about autism. If they’re not directly concerned they’ll probably just put autism in the long list of disabilities for which their awareness has been requested, once a year. Or worse. Awareness is easy, acceptance requires actual work. You can be aware of Al-Qaeda, you won’t automatically accept them, do you?

    ps: I also wanted to give my opinion about the parents versus adult aspies thing but it did not get published.

  11. I am a “light it up blue” parent, precisely BECAUSE I can’t take my daughter into public without people staring at us like she is an anomaly. I am NOT a “cure” person…I think research is important but other than gaining communication skills I’m fine with the way my daughter is. Light it up blue for awareness is a good thing, and it doesn’t always indicate how someone views autism.

  12. I am an autism mom. You have quite a great perspective.. My desire is that the whole world would have this perspective about autism and disabilities in general, but they don’t. I, myself, and our whole family, view autism awareness month as a way to educate people about autism. We don’t want our son to change for the world, EVER. We want the world to change and be a kinder place for him. We do not support any autism agencies that are doing research. All of those millions of dollars could be used in so many supportive services for autistic people, especially early on for parents that don’t have the funds for speech therapy and occupational therapy, counseling, and for the families that may need respite care, and/or fighting for inclusive education and an aide so that our son could have navigated better socially and not have had to be removed from school and homeschooled because of severe anxiety and bullying that only made it worse!! I know blue lights don’t help autistic people. But, if it makes one more person educate themselves about autism, then it has helped that one person to maybe be kinder

  13. Isn’t ironic that about 90% of Autistics have sensory issues, one of the most common being sensitivity to light… curebies make things worse when they try to fix us.

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