Why we need autistic adults to work with neurotypical parents
The freedom to collaborate
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The first version of this article was a plea to the autistic and neurodiverse community from my Facebook page last September. You’ll see from the references to migraine that I was having a pretty rubbish day when I wrote it. Just over a month before, we had removed ourselves from the school system in order to home educate, but both of us were still burned out beyond recognition. It was the only substantial thing I wrote for a couple of years, and it came from a place of anger at the injustice that we had faced during our two year struggle with the education system, one that we had finally had to retreat from.
Now, I’m looking back at this post from a position quite dramatically changed for the better. Though there are still challenges, we are both much more relaxed and happy. My now almost 13 yr old son is content at home, learning about anything he wants to, any way he wants to, including history, geography, science, current affairs, social issues and everyday maths. I’m back at work, from my delightfully re-decorated home office. And I am writing again for the first time in a long time.
Yet I think that the message in that post, and its feeling of desperation for somewhere to turn, is too important to lose in the morass of my Facebook posts, which are mostly a curated collection of other people’s words. (You can read them here). And looking at it from a calmer perspective, I also feel that perhaps I could have expressed some things better.
So, I have re-written my original post. And I am placing it here; somewhere it is less likely to be overlooked, I hope.
………… I'm lying here in a semi-darkened room on day 5 of the second migraine in just over a week with tinnitus ringing/rushing in my ears and my eyeballs gently pulsating. September sunshine sneaks through the curtains making it feel vaguely like someone is trying to scoop my left eyeball out with a teaspoon while holding my head still with a spike to the back of my skull. I'm feeling it from far away as I'm lying still. I am hoping the sun goes away later so I can attempt to get the poor dog out for a walk, despite the vertigo. Lying down, symptoms are manageable enough to feel bored, and guilty about missing work, again.
With the brightness on my phone turned to it's lowest I've been browsing some new Facebook pages over in the US. I've shared a couple of posts to my page. Things seem even worse than in the UK. I'm too exhausted to feel rage about what autistic kids, now adults, have been through, though I know I should. I just want to cry.
I look at my son lying sleeping next to me and wish the world was different.
My son is 12 and autistic. I'm fairly sure he's Pathologically Demand Avoidant (PDA), but I can't afford a private diagnosis. He's been living with a low grade brain tumour since he was 6. I recently had to pull him out of the UK school system after 5 years of low grade torture and 2 years of pure hell, and we're now home educating despite me being a single working mum. He's been co-sleeping with me throughout the 2 year hell due to anxiety and has recently decided my brushed cotton sheets are not good enough and he can only sleep on his fluffy dressing gown. He gets irritated if it isn't just so and keeps waking me up to rearrange it (not helping the migraine). He hasn't had a shower in about 3 weeks (I think that's a record). He will rarely leave the house unless it's to go to McDonald's, Tesco, Scotmid, Cex, or his Dad's, or it's ‘worth his while’. He finds people and outside scary.
He is also generous. He recently saved me the last Ferrero Roche I bought him as a surprise treat. (A £4 box in the weekly shop rather than the £8 box he picked up hopefully in Scotmid only to be told no.) He has a cracking sarcastic sense of humour and makes me laugh often, when I’m able to laugh. He knows more geography and history than I ever will. He loves Pokemon and dinosaurs and has a fairly encyclopedic knowledge of both. He is working towards world and galactic domination in various video games that involve managing insanely huge amounts of fictional money and resources. He has strong morals and is not afraid to express them. He shows me all sorts of interesting and funny YouTube videos. And he gives the best hugs.
My son is my favourite person in the whole world and I remind him of it often. He might irritate me intensely sometimes, but I would never want to change him.
I am, however, sad about how much fear, pain, and distress he's been through. I am angry about how much of that was unnecessarily inflicted on him by the education system. I do occasionally grieve for the easier life that he might have had, and yes, that I might have had, had he been tumour-less, without sensory issues, without processing challenges. Yet all these challenges and experiences are part of him, part of what has made him the amazing person he is. The diagnosis of autism at age 10 was an 'oh...so that's why...' moment. It was not some new crisis to cope with or condition to manage. He is still exactly the same person as he was before the diagnosis. My son. He is who he was meant to be. It is the world that needs to change to minimise his distress, not him.
I do, however, want my son to grow as a person and to be able to overcome those challenges that hold him back from where he wants to be. Sometimes that means my son gaining knowledge and skills, or shifting perspective. That needs to come from him, but I can facilitate. Sometimes it means changing things in his environment, where, at the moment, as an adult I have more influence. That needs me to learn as much as I can about how he experiences his environment so that I exert the right influence. Sometimes it means changing the world. For that I need help.
One, I thought obvious, source of help is the huge community of autistic adults on the internet. These people have lived experience of many of the challenges my son faces - and they have ideas about how the world needs to change. Unfortunately, if you look online or spend any time in autistic social media communities, it will become apparent that many autistic adults are often quite dismissive, or even hostile, towards neurotypical parents of autistic kids. I usually ended up using my Facebook page, originally set up to promote a blog, to pursue my education in autism. Using my personal Facebook profile was too… personal. Too often in my forays to learn more about how to best help my son I came across comments, and occasionally entire posts, making sweeping assumptions and generalisations about neurotypical people - especially those that are parents of autistic kids. We are accused of incompetence, lack of knowledge or understanding, nefarious agendas. And we are blamed for the traumatised state our children are in. These apparently widely-held stereotypes are far too hurtful and triggering to cope with unless mentally prepared. They were not something I wanted to come across while scrolling for inspiration and hope.
From what I've seen over the last couple of years, parents of neurodiverse kids are often isolated and on their knees. Consumed by fighting for change for their own children single handed. Swamped in blame from the education system and the 'support' system who just want to keep the status quo because there's no funding to do anything else. I’ve seen many parents, like me, reach out to the autistic community for help and advice regarding their anxious and traumatised children. The canaries in the system who are collatoral damage in the drive for standardisation and attendance and assessment over wellbeing in school. While some parts of the autistic social media community will tolerate neurotypical parents as long as they don't make any honest mistakes with language, other parts are openly hostile unless the parents identify as neurodivergent themselves. Very few places in the autistic or neurodiverse community have I really felt welcomed as an neurotypical parent of an autistic child.
Now, there is no doubt that there are some terrible neurotypical parents of autistic kids. There are probably many more terrible neurotypical parents of neurotypical kids, simply down to numbers. However, most neurotypical parents, just like most neurodiverse parents, are ok, whatever the neurotype of their child. Not perfect, but good enough to raise well adjusted human beings without traumatising them, and to love them fiercely. The fact that someone cannot identify as neurodivergent does not make their experiences of parenting an autistic child any less valid. Different to that of a neurodiverse parent most definitely. Probably a lot more observation, guesswork and questioning needed to 'get' something a neurodiverse parent might just ‘know’ from similar experiences. Where a neurodiverse parent can perhaps be magically intuitive from the start, a neurotypical parent may have to build that intuition up over years of patient detective work, often with an undiagnosed child, and sometimes with health factors conflating the issue.
We put my son’s sensory issues down to his tumour for 4 years before he was diagnosed as autistic. I'm still playing detective but I've learnt a lot from him. In fact the PDA Society now recommends strategies remarkably similar to those I developed simply by being in a parent-child relationship with my son, well before I knew he was autistic or had even heard of PDA. Every parent-child relationship experience is unique and valid, regardless of the neurotype combination. Every parent has the potential to be good enough.
I believe that both communities want autistic kids today to avoid the abuse and the trauma that many autistic adults were subjected to. Both communities want better systems, support that is actually accessible and actually helps rather than harms. Both want the communication of autistic kids to be heard and acted on, irrespective of whether it is verbal. Both communities want a world built so that it caters for all neurotypes and so that no child is made to feel so 'other'ed because of the way their brain happens to work ever again.
This knee-jerk, automatic alienation between these communities has to end. Neurotypical parents are not the enemy of autistic people. We should, in fact, be allies.
At the moment parents of autistic kids who don't believe they need 'fixed' don't seem to have many places to turn to. We often feel isolated and our families vulnerable. This is is starting to change for parents of neurodiverse kids in the UK, with Facebook pages like Missing the Mark, and Not Fine in School, and Define Fine that literally kept me sane for 2 years. Just knowing that it's not just us having these problems with school, Additional Support for Learning, educational psychologists, Social Work, Child and Adolescent Mental Health Services, education panels etc. etc. etc. gave me that extra strength I needed to keep the constant blame barrage out of my pounding head. I'm not useless. It's not all my fault. My son has real needs that these people are either refusing to acknowledge or are incapable of meeting. Sometimes both. However, a lot of these growing social media communities are concerned with how to cope with the system we've got. They feel like survival packs, field dressings, sticking plasters. What we really need to truly help our kids is to change the damn system, and we need help to do that.
I understand that there are a lot of angry autistic adults. And I am aware of at least some of the reasons for that anger. In the past many autistic voices have been drowned by ‘professionals’, and perhaps their parents, intent on ‘fixing’ what wasn't broken. The autistic person. These misguided efforts served only to traumatise the very person they intended to ‘fix’. In some places these activities are still on-going. Even where the more blatant attempts to ‘cure’ autism are absent, there often remain more subtle attempts to moderate behaviour in place of improving the environment that caused it, or indeed of just accepting it. Autistic adults have every right to be angry. So do autistic kids today. But it is important to point that anger in the correct direction.
There's a saying that if you've met one autistic person, you've met one autistic person. Well, if you have met one neurotypical person, you have met one neurotypical person. I am so tired of the abuse I see aimed either sweepingly at neurotypical parents, like we're some homogeneous blob or a hive mind, or, too often, squarely at individual parents just struggling to understand something, or daring to express the fact that they are finding things hard. Sometimes it feels like all neurotypical parents are fair game for some autistic adults to work out their issues and anger on. My son lashes out at me when he is hurting. It hurts me, but as the adult I put up with it, I don't take it personally, and we have 'the conversation' later, when the meltdown is over, so that we can address what really caused it. Some of the more aggressive autistic adults I have come across on-line seem to want to use all neurotypical parents as an emotional punchbag in a similar way. But we are not your parents.
I'll say that again. We are not your parents. We were not involved in your traumatic childhood. We do not deserve your anger and contempt.
We are also not all ‘autism moms', a slur frequently used within the autistic adult community - shorthand for a mother who considers herself a superhero for raising an autistic child, who victimises herself, and expresses negativity or grief about her child’s condition. and who probably supports Autism Speaks and the puzzle piece, both of which many autistic adults find offensive. It is a hurtful, and in the majority of cases, unwarranted stereotype.
I will openly admit that we may complain bitterly about how hard it is fighting the education system. Getting constantly blamed by the 'professionals' meant to be helping to resolve the crippling anxiety, absence from school, frequent meltdowns and any other challenges our children are facing daily. Knowing damn well that these ‘challenging behaviours’ are desperate cries for help from kids that have been masking their distress at school and need to let it all out in their safe space at home. And that increasingly they can't face going back. But, most of us also make it very clear that it is the system that is the problem and the cause of our feelings of utter helplessness, not the autism. Not our child. And it is. Very. Hard.
Not all neurotypical parents follow Autism Speaks and their quest for ‘interventions’. I had never even heard of them until I started entering autistic social media communities and hearing some of the horror stories about experiences with Applied Behaviour Analysis (ABA). We don't all want to change our kids. We are mostly just parents who want a better world for them - one where they can be less anxious and more themselves, where they are listened to and not trapped in sensory hells.
We are not a homogeneous blob and we do not deserve to be used as an emotional punch bag. Neurotypical parents are individual human beings with hopes and fears and feelings who are winging it at being a parent, the same as every parent in the history of the human race, and a lot of us are having a really hard time. When I first turned to the autistic community, my son was so depressed about school that he was talking to his friends about suicide. At 11 years old. It was heartbreaking. Not long after, I ended up suffering from extreme stress and depression due to the brick wall I was throwing myself at every day, trying to get my son proper support that would actually help rather than make things worse. I didn't need yet more blame and censure, I needed support from people who, I knew, understood just how hellish the school environment can be for an anxious autistic child.
Those neurotypical parents that reach out to the autistic community for help, are exactly the ones, I would suggest, that are trying their hardest to learn more in order to mess up less. We simply want information and advice to better help our neurodivergent children. How does hostility or condescension help meet that need? Where else can we go for accurate information on the kaleidoscope of what it is like to be autistic, what helps, what makes things worse? I do wonder how many parents that end up following Autism Speaks were rejected by the autistic adult community first…
My plea then, to autistic adults. If you can, please welcome like minded parents in to your social media communities whatever their neurotype. Validate our parental instincts to listen to our children (which we have been told constantly are wrong). Guide us where we've got hold of the wrong end of the stick (instead of jumping down our throats). Listen to our challenges with school and 'professionals' and give us tips and evidence to go back with (instead of making useless and condescending remarks about it not being a competition about who's got it worse, the parents or the kids). Have calm conversations with us about the things that we might say that upset you (instead of getting in a huff when we disagree with your views on what we meant by what we said).
If, as an individual or a community, you cannot bring yourself to support neurotypical parents, please at least refrain from adding any further vitriol to the large pool of blaming and shaming that we may already be drowning in. If we go under, so do our neurodivergent kids, the very people you surely want to support. You may not think you need or want us, but our kids most definitely do. Some parents may be so low in the water that the additional blame in some posts and comments from within autistic communities leaves us sobbing. Wondering if everyone is right and they really are just incompetent parents. Struggling to see the point of fighting the system any more. Perhaps thinking that maybe the kids would be better off without them. We cannot afford to feel this weak when we are fighting for our children’s lives, sometimes literally. If you want a space to be autistic or neurodiverse only, make that clear, nicely. And please think about the human beings on the other end of your posts.
I also have a challenge for autistic adults. At the moment, many parents of neurodivergent kids, especially those that are experts at masking like my son, seem to have 2 choices: spend our child's entire school life fighting the education system for dubious scraps at the expense of actually being there as a parent; or take them out of school. My son and I 'chose' the latter because neither of us could face carrying on fighting to stay in a system that is just not fit for purpose. It seems to me there should be more choices than this.
If we really want things to change for the neurodiverse community we need to make it change, and I would argue that it needs to start with the kids. Educate the parents and change the education system; the changes made there will flow out into the rest of society. And school is currently where even the verbal are voiceless, the sensory torture is mandatory, the social rules unintelligible and often pointless, and the processing differences routinely ignored. That is what eventually squashed my son so far back into his shell that all I could see of him were his fists. If you want to avoid another generation of traumatised autistic adults, there is a valid target for your anger, and for your pursuit of change.
Singular voices are just not powerful enough. It's like pissing in the wind. Parents spend a lot of time on their knees watching helplessly as their children continue to suffer. We need more of a collective impact. We need someone to have our backs while we get up off our knees and line up in vaguely the same direction. We need adult voices to back us up that cannot simply be dismissed as Anxious Mums or Lying Children. And we need ideas and knowledge about how things could be done better.
Autistic adults have a whole army of parents out there, already desperately trying to make their bit of the world change because they understand that it should not be their neurodiverse kids that need to change. Stop shunning them and help them. Provide a chance for pockets of very pissed off Mums to start to form and grow and merge around like minded angry autistic adults. With you as allies rather than yet another source of blame, who knows what we could topple with our combined rage? And with some like minded teachers and psychologists added into the mix, who knows what we could build?
My son has now woken up. Really Really wants a burger. The rolls are in the shop. Sigh. Migraines suck…