an autism parenting book done right

Jessie Hewitson, journalist and neurotypical Autism Mom, set out to write a book on parenting autistic children. After talking to autistic adults, she started over and wrote a much better book called Autism: How to raise a happy autistic child.

She’s based in the UK, and a lot of the book is about practical things that don’t concern me since I’m not actually raising a child. I think she helps the cause by writing honestly about her mindset before coming around to the neurodiversity point of view. Autism Warrior Parents typically lack the empathy and self-awareness needed to do this.

I realised halfway through that I had made a mistake. I was writing a book about autism by interviewing non-autistic people–it seemed as ridiculous as interviewing only men for a book about feminism. The penny dropped after I spoke to a few autistic adults. I started again, this time making autistic adults central to the book. I am so pleased I did. Not just becaues it was right thing to do, but because this way I got the best advice and insight.

I also wasn’t aware of the role language plays in the discussion of autism. This changed when I saw my son reading an article about autism in the kids’ newspaper we subscribe to. I felt panicky when he turned the page and I saw the headline–I was worried the piece would talk about ‘autism sufferers’ and leave him feeling like he had a disorder.

In other words, it doesn’t even occur to people that we can hear what’s said about us, with implications for our wellbeing.

She quotes Virginia Bovell:

It’s about equality of respect and equality of taking people seriously. Studies have explored how autistic people behave in certain circumstances versus neurotypicals, and how sometimes researchers have viewed in a bad light the positive attributes of autism. It’s just assumed the neurotypicals are doing the right thing.

In one study, autistic and neurotypical people were observed in an experiment involving donating money to charity. The autistic people continued to give the same way as they did when not observed, but the neurotypicals behaved more generously when they were being observed. The study was written up as if they were somehow wrong for not being governed by what others might think of them.

She mentions Donald Triplett, “Case 1” in Kanner’s early paper. I wasn’t aware of all this.:

Donald is still alive today, healthy at 82, and a major figure in our new book. When we first tracked him down, in 2007, we were astonished to learn how his life had turned out.

He lives in his own house (the house he grew up in) within a safe community, where everyone knows him, with friends he sees regularly, a Cadillac to get around in, and a hobby he pursues daily (golf). That’s when he is not enjoying his other hobby, travel. Donald, on his own, has travelled all over the United States and to a few dozen countries abroad. He has a closet full of albums packed with photos taken during his journeys.

His is the picture of the perfectly content retiree – not the life sentence in an institution which was nearly his lot – where he surely would have wilted, and never done any of those things. For that, his mother deserves enormous credit. In addition to bringing her boy home, she worked tirelessly to help him connect to the world around him, to give him language, to help him learn to take care of himself.

Something took in all this, because, by the time he was a teenager, Donald was able to attend a regular high school, and then college, where he came out with passing grades in French and mathematics.

Credit for these outcomes must also go to Donald himself. It was, after all, his innate intelligence and his own capacity for learning which led to this blooming into full potential.

But we saw something else when we went to Forest – and this is where we think the movie of Donald’s life would get interesting. The town itself played a part in Donald’s excellent outcome – the roughly 3,000 people of Forest, Mississippi, who made a probably unconscious but clear decision in how they were going to treat this strange boy, then man, who lived among them. They decided, in short, to accept him – to count him as “one of their own” and to protect him.

We know this because when we first visited Forest and began asking questions about Donald, at least three people warned us they would track us down and get even if we did anything to hurt Donald. That certainly told us something about how they saw him.

Back to the book:

I find it painful to think of what life was like for my son when he was a baby, with a mum and dad who couldn’t know innately what was going on for him. I think this situation can make the relationship between neurotypical parents and autistic babies and children very complex. Parents can’t seem to get close to a child who appears withdrawn–so they too withdraw, to protect themselves from the pain of rejection. I imagine the autistic child finds the neurotypical parents too much, too unpredictable. They don’t know how best to soothe him or her.

It’s painful to think about, which is why Autism Warrior Parents don’t, and then lash out at anyone who tries to make them.

Having these conversations changed my book, and my whole outlook. I started to understand why autistic people are so frustrated when non-autistic people speak for them in the media. It’s not just that it’s annoying, it’s that the information we are being given about autism is wrong.

It’s the details that get lost [LOL!]. For example, I would research a topic–say, eating–and speak to a (neurotypical) clinical psychologist, who would give me advice that I felt I already knew. Then I would speak to an autistic adult, who would explain that eating is difficult because of the sensory aspect; that a lump in their mashed potato could literally make them gag; that as soon as something unpredictable happened, they couldn’t eat.

I also understood for the first time the true width of the autism spectrum. I met warm, funny, highly self-aware, empathetic, married autistic people, the type we rarely hear about. It could be easy to conclude that their lives were easy, as on a surface level they have achieved all the goals expected by neurotypical society–they are working, have kids, are in meaningful relationships–but learning more about their challenges gave me a more accurate picture.

One woman, a very confident public speaker, described lying in bed for an hour every morning going over any possible outcome of the day in a bid to mitigate her anxiety. An academic who works in autism research told me that her anxiety can leave her in something close to a catatonic state.

Speaking to these adults amde me more precisely aware of the challenges–particularly how debilitating anxiety is. Yet even though I could see the difficulties clearer than before, it also lessened my fear. Some of the conversations were so interesting and funny I would race home to tell my husband about them. Getting to know these people, who wouldn’t want their child to be like them?

…I think if we are honest, fear is the thing that stops non-autistic parents like me from making that connection with the autism community. I don’t think it’s necessarily a fear of autism itself, though we have all absorbed some terrible ideas through popular culture over the years portraying autistic people as being weird or scary. For my part, before meeting Alan Gardner, I think I was worried I wouldn’t know the right language to use, or how to be with him.

But most of all, I think I was scared about the possibility of meeting an autistic adult who wasn’t happy, which would have sent me spiralling into panic over my son’s future. Meeting Alan, who is married with three kids, and has an amazing job and whom I liked very much, had the exact opposite result.

Thank you!

‘The happiest children are those who have been allowed to be themselves,’ says Sarah Hendrickx. ‘That doesn’t mean they can do what they like, but that what matters to them is validated. If they want their food in a certain bowl, then the family should respond by showing that, if it matters to them, they’ll make sure it happens. That sense of not being wrong all the time is crucial for a child to be able to grow up and say, “It’s OK to be me,” rather than consistently being frowned on.

‘There is a tendency among parents to think it’s not good for their kids to become fixated on something. Well, no one is 100 per cent flexible and everyone has things that matter, without which they feel shaken. The last thing you need is someone telling you that you are wrong to feel that way.

‘My son is autistic and was born into a quirky family. He likes his mayonnaise precisely on a certain spot on his plate. We’ve upheld this wish, and others like it. He’s grown up to be someone who is assured and very happy with himself. He’s never felt wrong on the basis of who he is. Yes, he was naughty, and yes, he’s been told off, but his core self was never challenged. We are not saying autistic children should do what they like.’

But this is what happens when everyone has their heads up their asses:

By year 6, Talia was displaying more noticeable anxious behavior–old or black-and-white pictures would terrify her. She would go on school trips and have to put her hood up when she saw these pictures. It was also the time when girls in her class started doing things that were a bit more grown-up and Talia felt left out, like she couldn’t relate. That caused massive anxiety for her socially.

Things got worse. Talia was asking me how to be happy–then when she was ten she asked me, “Mummy, can you kill me? I don’t want to be here. Can you do it?” I said, “I definitely can’t do that. Mummies and daddies can’t do it, I’m really sorry.”

Secondary school was like throwing her to the wolves. Teh school don’t get it and are absolutely no help. She was getting into trouble for not having her socks at the right level; teachers shouted at her. Getting a detention became a phobia. I was saying to the school, “Can you cut her some slack? I think this is what comes under reasonable adjustments.” I pointed out that they would widen a door for a wheelchair user but weren’t prepared to make any adjustments for my autistic daughter–but it did no good.

She started to get bullied and that was really bad. The bullying went onto social media. Two years ago, she did a massive self-harm and we ended up taking her to A&E and she went on suicide watch.

Talia was in hospital five times. We’d asked many times before this for an appointment with CAMHS but didn’t get any reply. I was phoning them begging them to see us. Then Talia ended up on a ward and suddenly they brought out the cavalry. There’s no doubt that the NHS is built for critical care, rather than for preventative care. Suddenly we accessed the most amazing people through CAMHS and we’ve been seeing them ever since. There are now people who come to see us at home too. The services are out there but you have to find them yourself. No one is going to tell you where they are. They are secret. It’s not until something really bad happens that they get on board.

The important thing about that story is that the children are learning to hate autistic people from the adults. This is the context in which debate about media representation are taking place. That’s somebody’s childhood, and will be their childhood for their whole life. Normal people did that to her. Who taught them about autism?

The reason I’m fucked up is middle school a lot more than it’s autism. Autism helped gain the academic knowledge I use to compensate for autism. I have fucked up attachment issues from being treated like shit, not from autism.

The book quotes Jasmine El-Doori talking about the issues and insecurities that lead Autism Warrior Moms to damage their children:

Mothers can very easily feel bad about themselves: “I want to resign from this job but I can’t” and guilt tends to spiral from this ambivalence. There is an increased need for validation from the child, or dependency on the child’s moods/progress, which tends to cause women to be more self-critical. I tend not to hear mothers of neurotypical children berating themselves after a long day at work when they haven’t been with their child.

A lot of mums of autistic children disclose a painful disappointment that their child cannot communicate verbally and a longing for them to return home from school talking about their day, like neurotypical children do. They perhaps feel that the relationship lacks intimacy because of this verbal deficit.

The fact we can’t predict the future is particularly hard to bear for some mums who want certainty. Mothers can withdraw from the child because of an overwhelming feeling of inadequacy.

Some mums withdraw into this little world of them and the child as a defensive manoeuvre. It can be that the mother’s mood is entirely dictated by the emotional state of her child–a volatile emotional rollercoaster for mums. This leaves little space for other relationships as it’s hard to navigate being emotionally engaged with a child without taking in or internalising all the emotional turbulence. It’s a back-and-forth between these two states: mums need to be available but resilient.

Some mothers get frustrated or feel patronised when everyone tells them what a marvellous job they are doing, when inside the last thing they feel like is Mary Poppins. They feel like a fraud and they often feel exasperated. I see some mums who were in denial about the potential warning signs of autism in the first years of life, beating themselves up about this as yet another failure.

I do wonder if the pressure on mums to be constantly helping their child develop, through teaching and challenging them at home, can sabotage that fun playtime between them. There is a lot of self-questioning: “Am I doing enough? Am I pushing my child to be something they are not? Can I love my child for being who he or she is?” One mum said she felt like she was trying to wean her son into a world that was imperfect for an autistic child.

An important question is: why does the dream of motherhood have to be shattered with an ASD diagnosis?

In my work with fathers with children who have ASD or additional needs, I have experiened a proneness to depression. For dads, most often the focus of negative thoughts revolves around anxiety about the child’s future. Equally, I often experience fathers expressing their suffering as a result of their partner withdrawing; she is totally absorbed in mothering her child and emotionally unavailable to him.

So the father’s pain seems to be twofold: fears for their child and a loss of intimacy in their relationship. This highlights a real sense of aloneness for fathers, as women are more likely to reach out to their peer group or family. Interestingly, I’ve found that fathers appear to be more accepting of the quality of provision of services available and less distrustful of professionals, whereas mothers are consistently presenting as trapped in the cycle of “no one is doing enough!” Psychologically speaking, this might suggest a marked disparity between maternal guilt and the attitude of fathers, who appear less self-blaming.

The author addresses another big factor in autistic kids not turning out optimally: parents not having any idea how to play with them.

I struggled to connect with my son when he was little and so I went on a course run by Dr Stella Acquarone, who taught me, counterintuitive as it may sound, how to play. Through the course I learned that I was tuning out while spending time with him. I felt rejected by him when we couldn’t play and this hurt me; my response, much like my son’s, was to disengage.

Another problem was the amount of energy I would put into trying to play. I made it hard work and therefore not much fun; I would burn out quickly. What I eventually realised was that playing can be a lot easier and calmer; I just needed to look at what my son was interested in and add to it. I’m sure I often annoyed or overwhelmed him by being too in his face trying to play on my terms, too verbal, too needy, too desperate to make a connection. And if I wasn’t on top of him, I’d retreated.

I was working hard at covering up how difficult I found it to communicate with my son and was terrified people would see through me. What kin of mother can’t instinctively do this? I thought. Every time I left the house–for a playdate, music class or to the park–I observed parents to whom it seemed to come so naturally.

I therefore spent much of the course, and my son’s young life, feeling horribly insecure, obsessing about my shortcomings. My focus was on me, rather than on him and working out what made him tick.

Before the course and his diagnosis, I was sensitive enough to know that my son wasn’t happy, but I didn’t know intuitively what he needed. I was waiting for him to behave in a certain way–‘normally’–and didn’t see him as an individual. That seems such an easy thing to do–see your child as an individual–but it’s tough to change the (often unconscious but emphatically neuro-typical) expectations of what you think a child should be, expectations that have been built up over a lifetime.

The last thing I’ll quote is this section on gender, which applies to me:

I feel awkward writing about the difference between autistic girls and autistic boys–it’s problematic in the same way that all generalisations based on gender are. I look at my son and think how he fits in with the female presentation of autism more than the male (he tends to mask his problems, he internalises things, he’s never disruptive in class and is very anxious). If the world were more gender-neutral, it would be interesting to see whether the difference between autistic boys and girls lessened.

In my case, I’ve wondered if it’s because I was socialized by my mom, who has a ton of autistic traits. It’s like I was raised by the autistic people who figured functioning out, sort of.