Autism Interview #62 Part 2: Ally Grace on Communication and Fighting Stigma

This post is a continuation of an interview with Ally Grace, Respectfully Connected blogger and autistic mother of five. Last week Ally discussed unschooling her children and advice for parents considering therapy for their children. This week Ally offered suggestions for communicating with your autistic children and challenges us to rethink how we advocate for them.

What advice do you have for parents who are struggling with finding ways to bridge the communication gap with their autistic child? What resources, devices, or approaches would you recommend?

 I would suggest to challenge the entire idea that there is a communication gap. Or more specifically, that there is a communication gap that is specifically caused by someone being autistic. There is a gap of experiences and ways of seeing the world, between adults and children. That is not to do with autism but being fundamentally wired for different things when we are kids as opposed to when we are adults. I think that people can buy into the autistic person as fundamentally ‘other,’ and I think this leads people to see things through that lens, missing out on the truth or on other possibilities.

All of us are essentially designed to be able to communicate with one another – people are wonderful communicators as a species. I feel like parents often dump huge barriers in the way of their relationships with their autistic children and then lament that they just do not understand their child! It is funny in a kind of dark way, to think that they first put the wall there and then complain that it’s in the way.

When we focus on our relationship with our children as an important thing and as a needed base to the rest of our life with our child, what tends to happen is that everything builds up on top of that strong, secure, reliable base. So, for almost all problems in my family, I look to my relationship with my child or children. And then solutions and ideas tend to follow that. I think that when it comes to autistic children, parents feel justified when they have communication issues and so they often make less of an effort to fix those problems or examine their own part in the problems. They seem quite likely to place all reasons onto the fact that their child is autistic. But, if you had communication or relationship problems with a non-autistic child, would you react differently? Would you look for ways to connect and enjoy a better relationship? I think most would. And so that is why I encourage people to not use their child being autistic as an excuse to not try to understand their kid and improve their relationship with them. I have seen so many people throw their child under the bus, complain near constantly about how they are causing trouble, and not even try to connect with them. Other people try to connect with them on biased terms without any consideration for their child’s needs and then exclaim ‘See?’ when it inevitably fails. These are the things that are in the way of so many parents – not their child’s autism.

I would start this whole process, of getting out of this mindset, by considering some uncomfortable possibilities about how you view your autistic child, think of them, react to them, and interact with them. The thoughts we have about our children and the core lenses through which we view them, funnel into our relationship with them. These things influence everything, so they are worth examining and recreating if necessary.

For instance, Do you believe your child should not be autistic? If yes, would the way you interacted with them change if you didn’t think that any more, or had never begun thinking that in the first instance?

Do you believe your child is defective and has communication deficiencies? What if you considered that their communication needs are simply not the same as yours? Would that help your relationship?

Do you see your child as damaged? Do you buy into the latest fear theories about what ’causes’ autism? Can you imagine how much more relaxed you could feel if you thought your child was amazing and fine just as they are? Would this help the ‘communication gap’?

Do you resent that your child is autistic? Do you look for ways to ‘fix’ it? How does your child feel about you trying to fix them? Could this be impacting your relationship with them? Would you enjoy being in a relationship with someone who was constantly trying to fix you?

What if a doctor had told you that your child was gifted instead of autistic? Would you have felt differently? Are social beliefs around autism definining your relationship with your autistic child? How can you change that, if it’s true?

Have you spoken to autistic adults about what they think autistic children need? Do you read the work of autistic people to learn respectfully about your child? Do you dismiss autistic people in favour of ‘autism parents’ who make you feel good? If yes, how may this be impacting your relationship with your child? Why do you think you are trying to feel good at the expense of learning new things that could help your child? Could you change this, and would this perhaps help your relationship with your child?

And I think there would be more questions and possibilities that could point to some ableism, discrimination, or maybe a cop-out that these things are there and happening. If we can work on those things, I think we are setting ourselves up to have a flourishing relationship with our child.

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Taking this question in a different way, in terms of speech or atypical language development – I would recommend being open to all of your child’s communication. Everyone communicates. We are born commnunicating! Finding respectful resources for communication involves seeing all communication as valuable – rather than, for instance, valuing verbal speech above all else. Putting verbal speech on a pedestal has a big impact upon kids and adults who naturally gravitate toward communication methods that are not verbal speech. They experience barriers to their communities, to relationships, and to being heard. I used to attend a playgroup where several parents deliberately didn’t buy a certain app for alternative communication because they were hoping to force their autistic children to speak more. They believed this was going to work, which is one of the problems with that. Everybody is wired to communicate, and you won’t stop or slow that by opening their communication options. And also, more worryingly – they were choosing speech over communicating at all! This is terrifying to me because they preferred that their children not be able to communicate very well. They chose to deliberately silence their children – so that they could try and force a few words out of them. As I wrote in an earlier question about fear – highly disrespectful and illogical decisions like that tend to be driven by fear, and this is why we must stop being so afraid and trust that our children have the right developmental timeline for them.

AAC, which stands for Augmentative and Alternative Communication – is a big topic to delve into if you are a parent who is supporting their child to communicate in wider ways than just speech. I think a good start would be Amy Sequenzia’s work (her website is “Non Speaking Autistic Speaking“), the Autonomous Press book Typed Words Loud Voices, and the blog Uncommon Sense Blog.

You’ve written about the importance of talking about disability as a way to fight stigma, and that ignoring it only reinforces the stigma. How can we encourage this attitude in our own communities, or approach this conversation with those who deny or minimize disability?

 I think that the primary way we will make progress in this area is to begin listening to disabled people. Currently, we have this social dynamic in which everyone feels entitled to begin talking about their opinions around disability. If someone has a disabled relative, they think they’re an expert. People don’t understand ableism and what disabled people really need, because they don’t usually ask them. And yet, these same people are the ones who put their voices out there taking space away from disabled people who wish to share their own experiences. If you have not experienced what it is like to live as a disabled person and come up against systemic barriers that are just all around you, inbuilt into your communities and families – then I just don’t think that you are the right person to be giving your theories about it all.

In parenting spaces – these are relevant to me because I am a parent and as a peaceful parent I read a lot of theories and ideas about alternatives to authoritarian-paradigm parenting – parents who are caring for disabled children seem to have an entitlement where they believe themselves to be experts about disability. They say things like ‘Noone understands this disability like we do!’ or ‘Noone knows my child as well as I do!’, seemingly missing the fact that their child is actually the person experiencing disability. They sweep their child’s experiences and knowledge to the side in order to self serve and puff themselves up in status. I think this is very damaging to the rights of the disabled because carers historically are our oppressors, and they are really not the right people to have the stage regarding disability and ableism. Whenever disabled people speak about this, such people usually show that they do in fact care more about self serving than about disabled rights. I have seldom seen a caregiver who was making someone else’s disability all about them, take on board the fact that they are perpetuating ableism and silencing the voices of disabled people (by putting their voices to the microphone instead of ours). Usually, I see people getting very angry and insisting that they are entitled to continue to do this. This indicates a true disrespect for the disabled. If we were respected, surely we would be permitted to speak about ourselves and surely we would be permitted to be the authorities on ourselves?

Disabled people constantly speak about the fact that ableism is just kind of there, all the time, everywhere. When people try to shy away from disability, this is taking the attention away from this ableism and instead is blaming disability itself for problems. We need to recognise that our communities could be full of happy, thriving, disabled people. Instead, we have disabled people whose lives are negatively impacted by ableism and who are being held back from the lives they could be experiencing. One of the major causes of this is the stigma of disability preventing discussions around what disabled people really need. We don’t need people to tell us we should say “Diffability”. We need people to recognise that we have barriers in our way. We don’t need people to refuse to speak about disability because ‘they don’t see disability’. We need people to recognise that being disabled does influence our lives, whether they see that or want it to be true or not. These are the conversations that will improve the lives of disabled people; so it is vitally important that we stop leaning on our squirmishness around disability and start looking for ableism and quashing stigma.

I think we can approach people with the fact that disabled people tend to prefer acknowledgement of their disability. There is this misguided belief that it is helpful and kind to mentally diminish the impact of ableism and ignore disability. It isn’t. So, when people realise that this is what disabled people are saying I feel that perhaps they will pause before continuing to spread the harmful rhetoric that if we just ignore disability and pretend there is no language to help us talk about it, ableism will go away and we can all just be happy. That’s not true, so the sooner we can cause people to question their long-held beliefs, the better.

What mistakes do neurotypical autism advocates make?

 I think most NT advocates buy into disability as a tragedy or as inspirational. They are usually deeply ableist and see disabled people through a lens of sadness, despair, grief, lost changes, dashed hopes, medicalisation, othering, and pathologisation. There are social factors at play that feed directly to parents of disabled children, which give these messages and which also give the entitlement to feel this way and to complain about it. They then, using this paradigm, attempt kindness and compassion. So, unfortunately they are just not coming from the right place to begin with! If someone advocates that we should be tolerant of the damaged, socially inept, emotionally bereft, autistic people that are unfortunately in this world – this is really damaging and unhelpful!   Not the part where they believe we should be kind to autistic people of course. But the part where they assume we are less-than and that we should be tolerated instead of seen as equal and instead of actually being given things that will allow us to get the same opportunities that nondisabled people get.

For any advocates reading this, please consider whether you are truly advocating for disabled people or whether you are advocating for yourself and your own agenda. Ableist support is not useful.

Another major problem is that advocates often cling to intent and to good will. If they have been being toxic and ableist, and causing harm, they will often say “But I was trying to help!” and can get indignant and upset. I understand that it can be upsetting to realise you have been perpetuating harm while thinking you were helping, but to throw this back onto disabled people and to have a self-centred response – is really problematic. Intent does not negate harm. The way to fix it after you realise you have been causing harm, is to learn how to not cause harm anymore. The way to approach this is not to claim that your intentions were good and so you therefore have every right to keep on causing harm. This is not at all helpful.

What’s the most important thing parents can do to help their child thrive with a positive autistic identity?

Love and appreciate your kids for who they are right now, not as some distant future adult. They are worthy and valuable and amazing, right in this moment. If you can understand this deeply, not as some wish but as something you feel and know – this is a pathway to thriving children.

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