In 2006, Autism Speaks released the following video. I’ll try to explain the issues I, and many other autistic people, have with it.
WARNING: Ableism, suicidal and homicidal ideation.
So let’s break this down.
The video debuted in 2006.
The video focuses solely on mothers of autistic children. There are no autistic adults, there are no autistic parents, there is nothing from the perspective of an autistic person. And it is vitally important to include parents of autistic people in the discussion of autism, because they can determine how their children grow up, and they need support and help too. But parents of autistic kids have been at the centre of the discussion for years now. It’s time to include autistic people. Autism Speaks doesn’t do this. They have only 2 autistic people on their Board of Directors, out of a total of 26 people. How can they speak for us when they barely include us? The addition of these autistic people is very recent.
The video starts with screaming, obviously distressed children. But instead of trying to figure out why these children are distressed (for example, many of them are being manhandled and pushed around), we hear from the parents who have to ‘deal’ with the screaming.
Throughout the video, there is no consideration for whether the children can understand what the parents are saying about them, whether they dislike being filmed, or whether they are distressed by having strangers in their home pointing cameras in their faces. If someone came into your home and filmed you, followed you when you went away, and you couldn’t speak, I’m pretty sure you might scream and cry too.
0.40: A child is described as being ‘like a baby’, without any consideration for the fact that she can hear and may understand this. Just because someone acts in typically ‘childish’ ways does not mean they cannot understand things.
1.02: Parents describe the lack of speech from their child. Autistic people can benefit from other means of communication such as writing, sign language, or AACs. Speech is not the only way to communicate. It can be hard to never hear your child speak, I don’t argue against this. But it’s also incredibly hard to be unable to speak (when I get extremely distressed, I cannot get words out. Many people with autism can communicate online with the written word but struggle with spoken language).
1.36: They show the mother changing her child’s nappies. On television. When the child cannot communicate consent. How would you feel if someone filmed you on the toilet and aired it?
3.18: Now this section is about children running out of the house, into traffic or other dangerous situation. This must have been terrifying and is something that should be highlighted and worked on because it puts a child in legitimate danger. Figuring out why the child is running is important. This is, in my opinion, a good thing to talk about. The parents and children and adults need more support to ensure the autistic person is safe.
4.12: I also agree that the judgement of autistic people and parents of autistic people by the general public is incredibly high. If something makes someone happy and doesn’t affect you, why would you care? If someone has ‘childish’ toys or interests how does it affect you? This is why we need autism acceptance, so people face less judgement.
4.38: A mother discusses how heartbreaking it is that her child doesn’t like the swings and has a meltdown over them. The judgement from other mothers is unwarranted and unacceptable. However, consider a park. It is full of children (incredibly loud), birds (incredibly loud), wind (which can brush hair into your face and hurt), and the swing may even hurt the child depending upon her sensory sensitivities. If your child doesn’t like the park, why continue to take them? Why not consider why they are having this meltdown, and work around it? For example giving her ear defenders to help with the birdsong and children screaming/laughing, or going during a time when most children are at school.
I agree with these mums that the general public needs more understanding and compassion, because judgemental looks are not gonna help a meltdown.
5.17: The mother holds her child, and tries to make them do a puzzle. She says she ‘wanted (child’s name) to do a puzzle’. What if the kid didn’t want to do one? Now I’m pretty sure if you try to force a non-autistic child to do something they don’t want to (such as a puzzle or their homework) they are gonna be annoyed, and might have a strop. Why does the kid need to do a puzzle? He’s jumping around the room, maybe he is in a sensory seeking mood that day and cannot sit quietly and do a puzzle. She also says her child can do the puzzle in 30 seconds when he wants to. To me, it sounds like a pretty boring puzzle. If you’re trying to make a kid do a dull task over and over, after they’ve already shown you they can do it, they are going to get bored, and fast. If someone tried to force me to do a puzzle over and over, and physically forced me to do it, I’d probably try to push away and scream if I couldn’t speak. Wouldn’t you?
5.33: A mother talks about her fear that her child may have injured another child at school. This is an understandable fear, because it could get her kid kicked out of school, or another child could be seriously hurt, or her child may be taken away. The school needs more understanding of autism, and her child’s individual needs, to ensure it doesn’t get to that point. Again, trying to figure out why the child is hurting someone else is important. Are they being bullied? Did they misunderstand a game (such as tag) and use more force than necessary? Are they attempting to communicate something? Are they seeking sensory input? The school needs more autism training to help staff figure this out.
6.00: This is the big one.
This part starts off with the mother’s talking about the lack of special education classes in the area. I cannot emphasise this enough: I agree with them. There is nowhere near enough funding for special education (in the UK and, I believe, in America), and there needs to be more!
The mum in the green shirt laments that parents are forced to put children in overcrowded classrooms where the kids don’t make progress. Again, I completely agree. Classrooms are overcrowded, teachers are underpaid, and the kids suffer. This needs to change.
Now here is a big controversy. At 6.10, the mother states that she had sat in a car for 15 minutes contemplating driving herself and her autistic child off a bridge. She thought this was preferable to putting her child in one of these schools. She only decided not to do this because she has a non-autistic daughter.
Her autistic child is in the room this whole time. She is right behind her. She can likely hear and understand what she is saying.
Imagine that. Your parent telling a stranger with a camera that they wanted to murder you and kill themselves, and didn’t do it because of your sibling. That would be… pretty traumatic to hear. It is disturbing to hear her say this with a slight smile and without anyone going ‘hold up, you wanted to MURDER your child? Maybe we should book this lady in for some kind of therapy, and take the child to somewhere safe’. If someone told you that they wanted to murder their non-autistic child (and not in a joking, ‘ugh they were being so annoying, I wanted to murder them!’ way), you would (hopefully) call someone about her because you were concerned for this child’s safety. But it’s okay when the child is autistic? No.
Autistic people are still being mistreated, and end up dead, due to mistreatment and neglect. Over 650 American autistic people have been murdered by their parents, or relatives in the last five years, according to the Autistic Self Advocacy Network. Autistic people are mistreated in Assessment and Treatment Units in the UK, according to the National Autistic Society.
This is unacceptable. When an autistic person is murdered there should NOT be sympathy for the murderer. There should be awareness of the lack of support that can cause many to do this, but people need to stop acting like the parents are the victims in these situations. The murdered person is the victim.
7.12: A mother feels sad that her other, non-autistic son ‘lost Christian (autistic child) too’. Lost? He’s right there… he isn’t lost. His communication is not understood, but that doesn’t mean he isn’t there! Autism doesn’t ‘take’ children, it is a part of them. It doesn’t ‘steal’ people.
7.16: A small, non-autistic child says she wishes she had a sister without autism.
Wow.
Children that young often repeat what their parents say. It’s likely her mum has said this so often she has started repeating it. Imagine hearing that as a child. I would be devastated if my brother said that (I know sometimes he wishes I would take part in activities and stuff so he could have someone to play with when on holiday, but I don’t think he wishes I was a completely different person. Except when I’m annoying him maybe. [Joke]).
7.22: A mother suggests the rate for divorce in parents with autistic children is ‘like, 80%’. Raising an autistic child is stressful, especially without the right support, and it could lead to stress in someone’s marriage. But the number is not that high: Article. This study suggests the divorce rate is higher than in families with no autistic children, but nowhere near the quoted 80%.
8.00: Parents discuss the high financial costs of therapy, sensory rooms, and just generally having an autistic child. This is important. The government needs to cover more therapies, and support families with autistic people more. I believe the situation may be worse in America due to the problems with insurance companies refusing to cover therapy costs.
8.48: A mother states that they keep borrowing money but keep being disappointed. This is a big problem actually, since there are so many fake ‘therapies’ for autistic people that can cause more harm than good (such as bleach enemas using MMS), and some just do nothing (the National Autistic Society describes some therapies and how to spot bad ones here). People are often desperate to help their autistic child, and are vulnerable to these scams. They lose money and the child may be harmed. We need acceptance of autism to help decrease the panic and search for a ‘cure’ that can accompany an autism diagnosis, so the parents of newly diagnosed kids aren’t fooled by these scams.
10.29: Mothers talk about how they are sad their child won’t do stereotypical things such as Little League (is that an American thing), have a girlfriend, get married, have kids. They are used to judging their children’s achievements by non-autistic standards. Many people won’t like sports, many do not get married or have children. Are they ‘missing something’ or broken? Of course not. It’s best not to push your dreams onto your children. It’s understandable to be sad that your child may not do something that you personally enjoyed (such as getting married), but it may be something that they wouldn’t enjoy, and they are not mini versions of their parents.
11.43: The mother talks about wanting a cure. This is controversial in the autism community, so I’ll just state that I don’t want a cure and neither do many autistic people. However, she does also assume her non-autistic child will have a baby, which I (personally) find frustrating. She may not want a baby. She’s still a baby herself!
12.04: ‘I just cannot accept we have to throw away this generation of children.’ So, first of all, autism has always existed. It’s not just this generation. The increase in autism diagnoses is not due to an epidemic, it is due to expanding diagnostic criteria including more people, and the ‘hidden generation’ of autistic adults starting to be diagnosed. Evidence. So it’s not just this generation of children.
Second, we are not garbage to be thrown away. Autism does not make us any less human, so why are people using such dehumanising statements?
12.30: The mother who wanted to murder her child asks her to say ‘I love you’. She does so and hugs her. But the mother then says ‘I’ll take that’.
What?
She did exactly as you asked. She showed affection verbally and physically. She did say the words in a mumbled, slightly slurred way, but that could easily be due to difficulty with motor coordination of her mouth. She is trying her best. She is telling you that she loves you after you just stated you had wanted to kill her. This infuriates me, that the mother acts like this isn’t enough.
In conclusion, these are my thoughts as an autistic adult, and I hope they give you another perspective to consider.