Developmentally Appropriate

I just read a blog post by, and had a brief twitter exchange with, a mom who insists she’s “not an autism mom” and who has her child undergoing ABA. She also insists that unlike other forms of ABA, the kind her child is enduring is a rainbows-and-unicorns kind, and that the behaviours bring reinforced are “developmentally appropriate.”

She was unable to define for me what that term meant. Only to give an example. Which was that her four-year-old would not be expected to sit quietly at a table to do their work. Fair enough, no four-year old ought to be expected to sit quietly.

But what made me uneasy was she was unable to tell me how she determined what was “developmentally appropriate”. When I asked how she determined what was “appropriate” she said she read a lot, had studied child development (I’m guessing not specific to autistic children) and listened to autistic adults and “autism parents”. Hmmm. So, she’s “not an autism mom” but listens to them. And bases her assumptions on what is appropriate, at least partially, on their opinions.

She failed to answer whether she was basing her judgement on what was appropriate for autistic or for non-autistic children. This is a huge issue for me. My eighteen year old autistic cousin cannot be expected to sit quietly at a table. It would not be appropriate for him. Would it be appropriate for my nine and ten year old autistic children? She might think it was. They can, after all, do that if they have to. But I don’t agree that they should have to. Would it be developmentally appropriate to expect me, a forty one year old, to sit quietly at the table to go my work? Again, I can if I have to but it is so stressful.

Who gets to decide what’s developmentally appropriate? She made it clear that she thinks the answer is “the parents”. But I wholeheartedly disagree. Especially if the parents themselves are not autistic. Even with the best will in the world, what behaviors they deem appropriate will be at best a wild guess.

Certain behaviors are seldom appropriate, for sure. We try to teach our children not to do anything downright dangerous or harmful to others. But so many autistic behaviours are absolutely appropriate in certain circumstances, and non-autistics can not comprehend a lot of these and get it wrong a lot. They cannot be the arbitrators of what is or isn’t appropriate for us.

So, sorry autism mom who insists you’re not an autism mom. I refuse to be swayed by your arguments in favour of ABA. No matter how great you think they are.


Whitney Dearest…..Thank you.

Whitney dearest, my dearest Whitney….

I want to thank you.

Thank you for showing me what it truly means to be an Autism Mom.

Thank you for writing a book that gives an account of the abuse you subjected your son to, so the whole world can see you for what you truly are.

Thank you for answering a letter I wrote to your publisher, which was not addressed to you in any way, shape or form, in which you warned me not to use the word “abuse” lightly. I never use words lightly. I think perhaps you do.

Thank you for writing a response on your blog, that I can freely quote from, as it’s a public forum. I had been nervous about sharing what you’d written to me, as I know you and your husband have threatened others who dared call you out.

To those autistic adults whom I have hurt or offended with my candor, I have only one ask ~ please read the entire book before drawing conclusions about my messages.

Thank you for having only one ask of me. The fact that actually reading your vile book will cause me untold pain and suffering seems to have escaped you. Or you simply don’t care. I actually threw up just reading some quotes from it. And I mean that quite literally.

As to the hurt feelings I unintentionally provoked, please understand that the was the very last thing I ever wanted to do, and not at all what I anticipated.

Thank you for diminishing my pain and grief to “hurt feelings”. And I’m sure you know what they say about intent. It was the last thing you ever wanted to do? My dearest, I’m sure the feelings of autistic adults never once entered your head. No wonder you never anticipated such a response from us.

my goal was to tell the uncensored truth about my own experience with Zack in the interest of helping others in pain.

Thank you for emphasising that your rubbish book is “uncensored”. I’d never have guessed that from the title. I’m sure the “others in pain” you mention are not people like me, actual autistic people. Because only non-autistic parents of autistic children can ever be in pain. And those poor parents don’t have a million other “tell it like it is, THE REAL TRUTH WARTS AND ALL” books written by them and for them. Those poor, poor parents.

I am not speaking for other parents, nor for other persons with Autism, nor for Zack himself. Nor could I. My goal, first and foremost, was to speak to other parents, caregivers and siblings of persons with Autism

Thank you for not speaking FOR other parents. You are speaking TO them. Giving them lovely advice and insights into how they too can abuse their autistic children.

Thank you for not speaking for “other persons with Autism”. Your use of the word “other” confuses me. Do you mean to imply that you at autistic, as in other than yourself, or do you mean other than your son?

Thank you for naming your son, btw. Because of course autistic people should never be allowed to be anonymous. Especially when intimate details of their daily lives, and medical information, are involved.

Thank you for acknowledging that autistic people are not your target audience. Unless we are parents, caregivers or siblings to other autistics I suppose.

Thank you for using the words “persons with Autism”. Because how else would I ever remember I was a person? Oh, wait, I’m not a “person with Autism” and neither are most autistic people. So I guess we don’t exist. Only those who prefer person-first language exist. Silly me.

I never laid a hostile hand on my son, nor said a cruel or disparaging remark to him.

Thank you for redefining what is meant by the word “hostile”. And thank you for not saying those remarks TO him, but instead ABOUT him, TO whoever buys your book.

I did use a protective hold

Thank you for also redefining what is meant by a “protective hold”. As I’m pretty sure what I read does not normally come under that description.

his phobias of unknown indoor spaces

Thank you for being sure that his problem with indoor spaces were “phobias” and not, you know, rational fears caused by sensory pain or discomfort. I too suffer from phobias, as well as having sensory issues, so I’m glad you’re not just bandying that word around without fully being aware of the difference between the two.

I understand that my unguarded description of the emotional pain I felt along the journey is searing for many adults with Autism to read, and in this respect I’m afraid I honestly cannot help.

Thank you for understanding….um, no. I don’t think you do understand at all. And you honestly CAN help. It’s not too late to pull the book.

you in no way resemble Zack.

Thank you for knowing every detail of our lives, our struggles, our achievements against the odds, to know that we “in no way” resemble your son. Except, you know, sharing his neurology.

You personify independence,

Thank you for your kind words. As I sit here in bed unable to get up, get dressed, brush my teeth, even eat, unless reminded to do so by other people or various props.

I know that the words I use to express my anguish can be excruciating and frustrating for you to hear, but an honest account of my own experience demands that I reveal them.

Thank you for being so sure that it is you expressing your anguish, and not the accounts of physical and mental cruelty so write about, that are “excruciating and frustrating”. Not the words I would have chosen myself. Those would have been closer to “horrifying and triggering of extreme pain”. And thank you for yet another “honest account” of someone who doesn’t care, or even notice, that their words can hurt others so much.

But I cannot spare you the pain of hearing my words while also speaking to others who might desperately need them in forging the way to their own reconciliation with the challenges they face.

Thank you for admitting that you cannot do what others, who write respectfully about their autistic children, and are mostly autistic themselves, have done and continue to do.

to all those with Autism and other disabilities, I am on your side, I am listening to your voice.

Thank you for being on the side of these mysterious persons “with Autism”. Pity you can’t also be on the side of, and listen to the voice of, autistics like me.


I check the reminder text one more time. 10.45, Paediatric Outpatients. I check the date. One time I wrote the date down wrong. And we arrived at the correct time, but a day late. I never want to repeat that.

So I collect her from school and we race to get to the appointment on time. If we’re just ten minutes late they’ll mark us as a DNA (Did Not Attend) and cancel it.

So I go up to the receptionist and give her my daughter’s name. “That’s my name too!” She says. Like she does every single time. Like her name tag says too. And I feign surprise. Like I do every single time.

Daughter gets weight and height measured and recorded and we take our seats in the Waiting Room.

Except there’s only one free seat. So she sits on my lap. And I’m wearing my big coat but she’s sitting on my lap so I can’t wriggle out of it. And it’s just so hot and stuffy. And we just sit there in silence waiting till there’s two seats vacant together so we can move.

Finally two people leave to be seen by the doctor so we scootch up to their seats. End of the row. Which suits us as it cuts the number of people sitting beside us. I let my daughter sit next to the wall. She hates sitting beside strangers. I give her her iPad. She’s nervous that the boy behind her can see what she’s up to on it. I put my arm around her to shield her from his view. But first I take off my coat.

The tv in the corner, belting out kids TV shows keeps drawing my attention. Shows my kids haven’t watched in so long they don’t remember them. It’s like a magnet, drawing my eyes in its direction. The volume is low so I can’t hear what they’re saying. Which makes it more surreal.

But I can hear other things. Babies crying. Children shouting. The buzzing of the fluorescent lights over my head. The ticking of a clock. Tick tock tick tock. Make it stop. I can’t see it though. Maybe it’s in the next room. People’s phones. People rummaging in their bags. People people people. Too many. All crammed into this tiny room with its animal life mural on the wall.

The amount of questions I’ve fielded over the years about that mural. How come the animals are all the wrong size. Why does the Tiger have the wrong colour eyes. Why are there African elephants in what appears to be India. I explain about artistic licence. But I know they are just complaining at the mural as a proxy for everything else.

I take a sip of water. I am glad I remembered it this time. There’s a water cooler at reception. But if we get up we could lose our precious seats. And I can’t leave her on her own in that room full of strangers. Plus I’m always afraid they’ll call her name and I won’t hear it. And then we’ll somehow miss our appointment. Which is silly but the fear is real. So now I bring a bottle of water with me.

I check my phone. We have been here twenty minutes. I know we’ll be here an hour at least. Have never escaped in less than that. And yet if it was us that was the tardy party, even by just ten minutes, our appointment would get cancelled.

I want to read a book. I am grateful for the kindle app on my phone. I start to read. But the noise, the heat, the other people. Book just not gonna happen. Also I’m still afraid I won’t hear our names being called.

I check Twitter. Throw out a few tweets about this awful waiting. Get a few replies. Chat a little. Now this is the kind of interaction I am ok with. I’m glad nobody in this room wants to chat.

There was that awkward morning when the waiting room contained people I knew. People who used to be good friends. Or as good as I ever have. But that came to an abrupt end. And then, here they were. Ignoring them was not an option. The wife came over to an empty seat beside me. Yup, no ignoring them. She chatted and I tried to reply appropriately. Their daughter had asthma. I was vague about mine. No need for them to know.

But today it was a room full of strangers. With anxious faces. And bored kids. It was beginning to empty a little. One hour gone. Peoples names being called. I could not catch any of them. They all sounded foreign now that I was frazzled. I was now afraid that even if I heard them call our names, I wouldn’t recognise them.

Only two more families in the waiting room. People who came in after us are being seen before us. But I know there are other doctors besides ours. I text my husband. It’s been an hour and a half. He jokes about bringing us our lunch. I know we’ll be seen by lunchtime as the doctors won’t want to miss that.

Finally he steps out of his office and calls our name. It’s 12.35. I am starving and tired but have to keep focused. He is pleased with her progress. 12.40 we are back at reception. At least next appointment is not for another six months, instead of every one month or three months up to now.

We pop into the supermarket on the way home and hoover up snacks. We’re going to need a full day to recover. But we survived to tell the tale and will be home soon.

Introducing Ragnhild….

Ragnhild I H Jordahl is lead singer in a band called Soda Fountain Rag.

The band consists of

Ragnhild on drums and vocals

Moa Paulin on keys

Alessandro Paderno on guitar

Fabio Benni on bass

How would you describe yourself?

I am an autistic, non-binary, and very geeky person. I am trying to become a philosopher (currently working on my PhD), and I have a music project which is called Soda Fountain Rag. Soda Fountain Rag has been going on in some shape or form since early 2006, and currently it is a band with three people besides myself.

I find describing myself a really difficult thing to do, as I do not know what people might find interesting. I am a cat person. I love the moons of the solar system. I am scared of driving, but working on becoming less scared. I love headphones. I am scared of being an adult. When I think about my school days I get nauseous. I enjoy being an adult because that means I never have to have a gym class again. I contradict myself. I enjoy and appreciate things being “OK”, because OK is far above how bad I know things can be. I live in the countryside outside of Bergen, Norway, with my husband and our cat. I am never lonely, and never bored. I like to climb trees, but finding good trees to climb is hard.

When did you first realise you were autistic?

It was first suggested to me by my then psychologist in January 2015, after I had been very ill for a long time. I was just being shipped from psychologists to psychiatrists and back again, and no one really did a proper job, until this one person asked me whether I had heard about Asperger Syndrome, and said that she suspected I had that. I reacted to this by going to the library, because I didn’t have enough information about autism to really know what she had suggested. After reading about Asperger’s and autism for a short while I started to recognize myself in the descriptions I read. The stuff I struggled with, and the stuff I had struggled with in the past suddenly started to make sense. It was a wonderful feeling! After this we started on the path to a formal diagnosis of Asperger Syndrome (still a diagnosis in Norway where I’m from). In the beginning the Asperger diagnosis was important for me, but after some months had passed I settled for autistic as my identity. Discovering other autistic people, and seeing that there is a whole autistic community out there has been truly wonderful for me. Both because it is lovely to meet people with similar experiences to mine, but also because this community teaches me a lot. There are still lots of things about autism I do not know, or do not understand, and I want to learn more. Lately autism in itself has been a special interest for me.

How do you think being autistic has impacted your art?

I think it has impacted both the art in itself and also the fact that I am an artist, and that I feel I belong on a stage. Particularly in childhood, when life at school was hell, the life on stage as a dancer was very important to me. This was a way of interacting with people which was scripted, which had distance, where everything had its place and made sense, and where I could pretend to be someone else, someone with different properties. When I was dancing I was worth something. This was not the case in school. I am forever grateful to my dance teachers for giving me the feeling I was worth something, and equally disappointed in my school teachers for the opposite reason.

The same things apply now that I am a musician. I think it can be hard to understand how someone who is not very competent on human interaction and who has pretty grave social anxiety can thrive on stage, but I think it is connected to the fact that the concert situation is mine, and that when I am on stage it is a situation I can control. You cannot control an ordinary conversation in the same way. And even though the songs are written some time ago, and the set list is decided, it is still communication, and I still have something important to say to my audience in those moments the concert lasts.

In addition, I think that being autistic both influences the songwriting process, and also the topics explored in the lyrics, with songs like “Lovesong for the Geek”, and “I sit and wait for what” for example. I need to be hyperfocused when writing songs. I want the process to be fast. Songs which are not more or less finished in one day will most likely never be finished.

It is of course also the case that it might have been easier to travel around and play concerts with a neurotypical brain… So in that sense being autistic does not only influence things in solely positive ways. I assume it is practical to be able to contact promoters, to not be afraid of meeting new people, and so on. However, I have wonderful people in my band which makes it possible for me to have gigs organized without me being the one trying to organize these things.

What advice would you give other autistics who wanted to develop their creative side?

Always do something you love doing. Don’t try to make compromises with your art to fit a particular public. I have very marginal success with the stuff I do, but I was able to find a tiny group of people who like the stuff I make, and I would rather mean something to this tiny group than try to find a larger audience and then fail at that…

Here’s a link to a video of the song Lovesong for a Geek played in London 2016

“I have some autistic traits, but….”

Something I keep coming across is people saying things along the lines of “A lot of people think I’m autistic. I do have some of the traits but….” And then they list some trait that is considered “autistic” but that they don’t have.

“I am too social.”

“I’m an extrovert.”

“I have no problem with eye contact.”

“I don’t stim.”

“I don’t like routines.”

There are two points I want to make about this phenomenon.

First of all, are you sure?

I thought I didn’t stim. I had a very narrow definition of stimming and didn’t realise things like rubbing my clothes, picking my scalp, biting my lips etc were all stims. A lot of us have “hidden” stims. We tone them down, cover them up, or go for more socially acceptable ones such as biting our nails. This can either be deliberate, when our more obvious stims have been shown to be frowned upon, but also can be unconscious. Stims are as broad and varied as we are. So, you may think you don’t stim, but actually you do.

Same goes for things like socialising. You may think you socialise well, and indeed that may be true. But you may need more “down time” after than a non-autistic person. You may think your social issues derive from tiredness or depression rather than autism. But an extroverted autistic person may present exactly as you do. You just haven’t compared notes with one.

Secondly, autistics aren’t a monolith. We don’t all have every single trait.

Some autistics make eye contact, others don’t. Some like routine, others don’t. We are as varied as any other sector of society. We don’t all have every single “autistic trait”. Just because you are missing a few doesn’t mean you’re not autistic. Also, the criteria of “traits” has been shown over and over again to be flawed. The push towards expanding out to “PDA traits”, “female traits” etc shows this. So many autistics are being missed due to the narrow focus of the current criteria.

So, again, I re-iterate a point I have made many times. If you think that you’re autistic, then you probably are. And if you’re not sure, then I suggest you do more reading and self-reflection and you will soon find your answer.


I am tired.

I am weary.

I am fatigued.

I am bloody exhausted.

There’s this tiredness those of us with chronic illnesses and disabilities get. Medically it’s referred to as “fatigue”, but it is so much more than that.

Too tired to eat, to drink, to move, to think.

Imagine the tiredest you’ve ever been. And multiply by infinity.

I don’t have CFS/ME, but my conditions are heavily linked with it. The fatigue felt is probably very close. And so I identify very closely with that community.

And a member of that community, Jennifer Brea, has made a wonderful documentary that really captures the exhaustion I feel.

I have written about this documentary before. And will again. As it covers a lot of topics that affect my life.

It’s called “Unrest” and I watched it on Netflix. And I really recommend it to everyone and anyone. Whether directly effected or just an ally.

Please watch it.

While I lie here, too tired to get out of bed, and wait for this day to be over.

Revised thoughts about PDA.

I have written before about Pathological Demand Avoidance. I fit a lot of the criteria and see so much of me in it. But, having done more reading, as I always do more reading and never think I know it all, I have changed my views on it.

As with many people, I hate the name, especially the “pathological” part. But I’ve always hated the name, and the medicalisation of the group of people labelled with PDA, so that’s not news.

What has changed is that I can now understand the objections that some prominent autistics have to not just the label but also the framing of PDA. This piece by Damien Milton is very well written, though may need reading more than once to fully understand the points he’s making.

And so I now realise that PDA is not a “subset” of autism. And neither is Aspergers. And I no longer think you can distinguish between the PDA and Aspergers profiles. Yes, my daughter fits a lot of the criteria for the former, and my son the latter, but there are much more overlapping similarities between them than differences.

I wrote before about why I hate distinguishing between Aspergers and Autism. And it was hypocritical of me to then do the same to PDA. They are all just flavours and hues of autism.

I do understand why PDA, “atypical” Autism, “female” autism etc were conjured up. The criteria and checklists for “typical” autism miss so many of us. But instead of creating new categories of autism, new labels etc, I feel it would be more useful to have better, more inclusive, criteria.

I had thought PDA would be useful for explaining my daughter’s behaviour to her teachers. But have noticed I’ve never used the term PDA when talking to them. I just explain her traits as her personal autistic nuances. It does take more explaining as she doesn’t present as “typically” as her brother. But they are both just as autistic as each other, and just as unique. Like all autistics.