9 Nov 2015

Troubled by Autism Training

I attended a relationships and sexuality education (RSE) training day hosted by Unison in Belfast and provided by Middletown Centre for Autism. It was free to attend as the Centre is fully funded by the education departments of Northern Ireland and the Republic. Most of those attending today were teachers though parents accounted for a large portion of delegates also. As usual at these types of events, the trainer proceeded as though the idea that any of the delegates might themselves be autistic was utterly unthinkable.

I have researched RSE and autism in detail for both my post graduate course and to equip my autistic son with the right information and skills. I also did some voluntary work for the NAS on an RSE program for autistic adults and completed a course on sexual health education. I wanted to attend today's training to see if I could pick up some more practical tips and ideas. I always gained something from any previous Middletown training even if it was on a topic I already had some knowledge of.

The trainer started off by defining and explaining autism using the pathology paradigm. I was concerned that she felt the need to spend some effort telling the teachers attending that autism is a real condition diagnosed only after careful observation and not an excuse for bad parenting or bold children. Are we really still at this point?

It quickly became clear that her speaking style was to make sweeping generalisations and to refer to autistic people as "they". She never said the word autistic once but used person first language throughout despite the well established preference of autistic people themselves for identity first language. Jim Sinclair wrote about this in 1999- it's high time the message got through.

The day started with a quiz for delegates. One question asked "how long can puberty last for a young person with autism?"
I'd written- same as for everyone else, around 4 years. When we went through the answers the trainer said that it can last longer for autistic people- even as late as 22.
I've never heard this before and a quick search hasn't turned anything up but I welcome any insight on this.

One slide said "autism is not curable but treatable with interventions."
I disagree, it's neither curable nor treatable.

She said that "Asperger's is autism with high IQ."
Oh really?

She said that they have a visual learning style. (What all of *them*?)

She said that while *we* (non-autistics) learn by osmosis, "our [autistic] children do not pick things up."

She told a story about a boy who was upset while playing football and said it was because of theory of mind and that "he had no understanding that other people have differing opinions."

She said that if a child with autism goes to brush his teeth and there's no toothpaste left, he will stand still because they can't problem solve.

She shared a slide of the ways in which most people learn about RSE. She said that autistic kids don't read magazines (unless it's Super Mario or similar) and they don't go to events like the school disco or weddings or naming ceremonies.
Oh really?
(And what about autistic girls, many of whom devour magazines aimed at teen girls?)

There was a video shown with 4 office workers in a canteen. One woman is crying as she's just split from her boyfriend while the other woman makes sympathetic comments. The sad woman asked "why did he dump me" and the autistic character pipes up that maybe he thought she was ugly. Silly literal autistic man- that got a big laugh. I sneered- I've seen this sniggering at autistic characteristics before and it's unacceptable.

She said that "children with autism" don't like it when people look through their school bags for notes or whatever but they lack the skills to say stop.

At one stage she asked us to call out what we think RSE for children with autism should contain.
I said "how to say no."

She quoted Wenn Lawson and told the group that Wenn is now gender neutral and repeatedly referred to him as she.

She said that girls internalise behaviours and symptoms but boys externalise.

She said that you should keep electronic devices out of children's bedrooms at night due to "neurons coming off the phone." I hope I misheard- but dear lord!

At this stage I made up my mind to leave at the lunch break. I had not gained anything from this except how not to provide RSE for autism training.

There was some useful information shared that could help parents and teachers. She talked about the importance of respecting the values of the family and emphasised that the parent is the main teacher. She talked about emotions, safety, respect, and starting this process early. She talked about the need to be aware of sensory issues. I'm sure there was more useful and well informed information provided in the 2nd part of the training that I missed.

However I will be writing to Middletown Autism Centre about the issues outlined above.

17 May 2015

A Post to Guardian Dad For Autistic Kid

Content warning- disablism.

Yesterday the Guardian published a letter from a man to his autistic son entitled, A letter to … my son, who has autism, for whom I’ll always do my best. Read this at your peril as it is truly vile.

With just a few deviations, this letter follows the tried and tested Assembly Manual for Autism Articles TM  which I created in 2008.

Guardian Dad starts off describing Autistic Kid's arrival into the world, how he felt "total, unconditional love" and envisaged watching Autistic Kid "grow up, go to university, find love, then maybe settle down and have his own family." The thought that Autistic Kid might not want to follow such a path doesn't seem to have occurred to him.

He then weirdly complains about his own parents choice to leave Autistic Kid "half of everything" in their wills. Is this because Guardian Dad wanted it all for himself?

Then, following stage 4 of the autism article template, "the parents realise the child is somehow different, something is not quite right" Guardian Dad describes how Autistic Kid "didn't play very well [...] flitting from toy to toy, with no concern for the people around you and ignoring any child who engaged with you."

I would speculate that Autistic Kid was playing differently not badly and it's impossible to say he lacked concern for other people. Autistic Kid's other kiddie crime was to "only talk to adults when [he] wanted them to do something" so we know he communicated via speech. Anyway it turned out that Autistic Kid is autistic.

Then Guardian Dad for the second time in a 700 word article, expresses how he hates himself for being right. Despite his professed aversion, he sure wants us to know about his rightness record.

The next section is outrageous and warrants a content warning. Remember this is aimed at a six year old child:

"You love your mother, which is good – because you make her life hell. Without your outward signs of affection towards her I don’t know if she could maintain the abuse you put her through. I've watched a loving, kind woman become a tired, hard, uncaring, dispassionate bitch. But all this is aimed at me, with you only getting the occasional frustrated tone, or at worst a sigh of irritation. 
She loves you with all her heart, but that means there is no room for anything else. She will fight for you until her last breath. But any type of intimacy between the two of us has vanished. In six years she’s aged 20 while I’ve put on 30lb and have become more isolated than ever. I hold back as much as I can, but sometimes I snap. I’m sorry. I know it distresses you when we argue, and I hate myself for doing it."  [My bold]

There is so much wrong with this. Guardian Dad ignores the power relationship between small child and adult couple. The child is not abusive- he isn't using coercive behaviors to maintain power and control over the parents. He has a developmental disability that affects how he perceives and interacts with the world. He may well have multiple sensory sensitivities. And believe me, Autistic Kid is picking up on how Guardian Dad feels about him and his mother.

I am disturbed by Guardian Dad's venomous depiction of his wife and the revelation that he sometimes snaps and argues with his wife though he knows it distresses Autistic Kid.

Guardian Dad feels "bereaved – for the family I should have had. I am a good person and this should not be happening to me." He talks about how he thinks about leaving. Poor Guardian Dad, my heart bleeds for him. He was owed a more perfect life than this with a faulty child and a tired, hard, uncaring, dispassionate bitch for a wife. And he got fat. None of this is his fault, oh no he's a "good person". We know this because he says it though he doesn't share anything that shows it.

"But we love you more than ever. You’re not responsible for any of this – it’s your disability. We know that you try your best, but you become confused and anxious about everything that is going on around you.  Neither your mother nor I know what the future will hold, but we still feel the same way about you today as that first time we saw you."

Guardian Dad is blaming Autistic Kid even though he knows that the world is a scary place for him. Writing this letter to a public forum is not a loving act. It adds to the mountain of anti-autism rhetoric that will only serve to make life harder for Autistic Kid, my own son, and all other autistic people.

Guardian Dad absolves himself from all responsibility. He resents the time his wife spends with his son. He directly places the blame for life not turning out how he wanted it to on the shoulders of a disabled child.

If he had written this to his therapist that would be ok. If he had written an article expressing how he finds it difficult to father his autistic child, and described some of the problems they had faced, that would also be fine- so long as he didn't blame the kid. If he had described how social security cuts are impacting on his family and how he has to fight for support I would applaud him. If he had come to me in my work and shared these thoughts with me I would have encouraged him to figure out what he could do to make things better and helped him get appropriate support from various agencies. But Guardian Dad wrote a very public letter even if it is anonymous. His sense of entitlement and self-absorption shine through every paragraph. The Guardian would never have published a letter from a father blaming their small non-disabled child for all their problems.

Autistic Kid didn't get the father he should have. I would like him to know: you keep on being your own awesome autistic self and I hope that one day you will know there is a community out there who will welcome, understand and embrace you.

18 Apr 2015

Yes to Marriage Equality

I've just written about our wedding on April 9 and described what a beautiful and perfect day it was. I had married before, 19 years ago. It was an unhappy marriage that I tried for many years to fix before coming to accept, with the support of many people around me and the help of Women's Aid, that staying married would destroy my life and likely those of my children. The separation happened four years ago and the horrendous task of divorcing took a few years more.

I am forever grateful to the people who helped the children and me through that time. I am indebted to all those who over the years, campaigned to change the definition of marriage and make divorce legal. They ensured that children receive the protections they deserve and their efforts meant that I could be free from a terrible situation and, as a person who'd had to stop paid work to mind the children, was not left destitute.

For years after the separation I was a single mother of three. For one of those years, my sister lived with us and for all of them, all members of my family and our friends, have been there for us providing practical and emotional support when we needed it. We never stopped being a family even though we did not fit the proscribed model of a nuclear family. I've often heard campaigners against equal marriage bang on about how children deserve a mother and a father. What children need, as I have discovered, is to be free from abusive situations and to have access to people around them who love them and on whom they can rely. The precise set-up is not important.

I had never expected to find love, yet in July 2012 I met a man who I am now married to. He and I are perfect for each other; as I said on our wedding day, his weirdnesses and mine match! It was important for us as a couple to marry. We wanted to make our union legally binding, to demonstrate to the children that we are both there for them for the long haul. We wanted a party and a chance to show our friends and family just how much we mean to each other. We wanted to be husband and wife.

Everyone is entitled to arrange their relationships in whatever way works best for them. My relationship is no better than that of my friends who opted not to marry. I don't think that anyone needs to marry to be committed to their partner. Many people oppose the institution of marriage for perfectly valid reasons. But what all people deserve is to have that choice. I have heard the reasons people have given for opposing equal marriage and none stand up to scrutiny. There is no reason why marriage need be between a man and a women only.

The joy we had on being able to marry, the ability to make that decision is something all people ought in a civilised and caring society to share. The only reason why anyone would deny that to other couple is because they think those relationships are less important and that is an opinion based on bigotry. Our children are listening, we need to let them know that they are all valued and that we oppose the dreadful bigotry that LGBT folk of my generation endured growing up. We need to end this ridiculous inequality in all corners of Ireland and let them ALL grow up with the choice to marry or not marry as they see fit.

Our Wedding

Thursday April 9th was the best and happiest day of my life so far. My three children, our closest friends and beloved family members gathered with me and the man I love, to witness our marriage. We had the ceremony in Belfast City Hall with a registrar who did everything she could to make it special and personal while also accommodating Ryan's needs. We and the children walked in together and Ryan read out his own words:
"I am happy today because my mum and Micheál are getting married. That is great and loving and wonderful.
Micheál is my friend. He is funny and sometimes silly. We go to Tesco and he buys me the right cookies and DVDs. I like taking him to the cinema.
My mum is beautiful and kind. We go to the Transport Museum and W5 and the funfair.
Our family will always be friends and love will win the day."

By Neil Arthurs Photography

We exchanged our vows including some we'd written ourselves:
In all the world, there is no heart for me like yours.
In all the world, there is no love for you like mine.
I promise to be your sidekick and your best friend, to keep laughing with you, to mind you when you need it and lean on you when I need it.
(To love these 3 children as I officially become your partner in their lives)
To share all my joys and sorrows with you,
To love and support you through sunshine and rain for the rest of my days. 
By Neil Arthurs Photography

My two boys in the photo above are dealing with events in their own way; Michael, like every other man in my family, was in bits crying and Ryan was perfectly at ease listening to his music.

I had been able to find a poem to read out, The Present by Michael Donaghy, that expresses beautifully what this means to me and which fits with both my nerdy and sentimental sides:
For the present there is just one moon,
though every level pond gives back another.
But the bright disc shining in the black lagoon,
perceived by astrophysicist and lover,
is milliseconds old. And even that light’s
seven minutes older than its source.
And the stars we think we see on moonless nights
are long extinguished. And, of course,
this very moment, as you read this line,
is literally gone before you know it.
Forget the here-and-now. We have no time
but this device of wantonness and wit.
Make me this present then: your hand in mine,
and we’ll live out our lives in it.
And Michéal read The Sailor's Vow by Alan Jenkins:
The life I spent so lavishly
Before we met
Seems one long night, in memory,
Of sea-fever and sea-fret –
Which led me here, to you, to this:
Our haven below decks.
You anchor me, I you, with a kiss
(Though the coast is strewn with wrecks).
Official documents were signed and we were officially and legally married and it was time to celebrate.

By Neil Arthurs Photography

Everyone was gorgeous and looks beautiful in the photos.
Our reception was in the Harlem Cafe Belfast just round the corner from City Hall so we just walked over and enjoyed a few glasses of prosecco to get the party started. And boy did we party.
Photo by Red Mum 

Before we had our meal, Micheál and I, his uncle and my dad all gave short speeches. Dad told everyone how Micheál had brought happiness to our home. I managed to gulp-weep just twice and since I usually cry st the least wee emotional boost, that was pretty good going. When we'd finished, my daughter Tara stood up and in her very own way, said how much she and the boys love us both and are so happy to see us marry.

The food was gorgeous and plentiful, the staff were fantastically friendly and helpful, and everyone I spoke to said it was the best wedding meal they'd ever had. Then the music kicked in and shoes were kicked off as my gang and his took to the floor to see who had the best moves- the Dubs or the Nordies. There were no winners, but what we lacked in grace and ability we made up for in joyful exuberance! And what made my heart sing was how obvious it was that all our guests were having a fantastic time. Best of all though, was how delighted my three children were with the marriage and the day itself. We had prepared a chill-out zone for Ryan and had plans in place to take him away early if the crowd and noise became too much for him. But he was in his element hanging out with his cousins, yapping and dancing. At one stage he was even swinging around to the Pogues with Micheál's aunties! No one could have predicted that.

It was a day filled with love, laughter, music, wine and good food. We were floating on the wave of warm feelings and enthusiasm from all around us, both our guests and from people who couldn't be there but sent messages filled with love and kind wishes. People got to see why we wanted to marry, to understand how Micheál, me and the kids are family. It was the most perfect day imaginable and if I'm ever stressed or low in the years to come, I will close my eyes and recall the moment when I was serenaded by 3 Smiths to this and all will be brighter.

(I've written a follow up post on why everyone should be able to have their day.)

3 Mar 2015

Never Say Never

In Saturday's Guardian was an short piece called "What I'm really thinking: the grandmother of an autistic child" in which a woman describes an outing with her 7 year old grandson Jimmy. Obviously we need to have some insight into the difficulties this causes her because that's the standard narrative for any and all articles on autism which centre on a family member and not autistic people themselves. So Grandma describes how "the red-faced Jimmy who is almost out of control" is "screaming and lunging violently at the locked doors" of some public toilets.

Later when Jimmy has settled Grandma discloses that she "like[s] to imagine" that they look normal and admits that few of her friends know that she has an autistic grandson in case they offer what she describes as "well-meaning but inappropriate advice" such as a book recommendation by an autistic author. "It breaks my heart because I know that Jimmy, even with the best help in the world, will never be able to read or write or lead a “normal” life."

I have not bothered to comment on a Guardian article for a few years but I wanted to reach out to this woman. I swallowed my distaste for the assumptions and probably unexamined attitudes regarding disabled lives and the potential to learn and develop. So doing my best to be considerate and temperate, I left a comment:
"If your friend's advice is to read books by autistic authors, then it is both well meaning and appropriate. Also, you cannot possibly know that Jimmy, aged only 7, will never be able to read or what kind of life he will lead. Your love and the time you spend with him coupled with good education and natural progression will help him live up to his potential. Take heart!" 
The most helpful thing to me in knowing how best to help my son has been listening to people who know what it's like to be autistic. Dismissing advice to read autistic writers is to my mind, ill-considered. Also it bothers me to read comments of the "my child will never" variety and we've all seen them numerous times in autism discussions. Sparrow Rose Jones wrote about the damage such statements can do:
"So . . . what is it that you are actually saying when you look at my life and say that I am not like your child? In a very real sense, you are saying that you don't believe in your child. You are saying that your child cannot grow to be what I am, do what I have done. You are signing off on a package that has not been delivered yet. You are dismissing your child's potential for amazing growth and change."
My autistic son will be 15 this year. I can't possibly list all the skills and knowledge he has amassed since he was 7 and like all of us, he will continue to learn and progress throughout his life.

(A couple of detractors took issue with my comment, but they showed so little insight and understanding that their views are beneath my regard.)

1 Mar 2015

Assembly Manual for Autism Articles

I haven't seen one of these for a while- a newspaper article on a parent's view of autism that adheres rigorously to the the template I wrote in 2008. Today offering is titled Autism and ABA: 'My beautiful, fun little boy was slipping away from me'. In this we learn how wealthy, beautiful and accomplished Tanja Gullestrup uses tough-love therapy to "stop her losing [her three year old son] to this isolating condition".

So here's Step 1-4 of the Autism Article TM Template (Step 5 is optional and refers to vaccination-bashing autism articles) :

1: Baby is born
2: Everyone rejoices
3: Baby grows
4: Mum realises baby is somehow different, something is not quite right,

And lo! the template it doth predict the story most accurately as we learn that the "usually smiley and playful" child "wasn't making eye contact with anyone and didn't appear to be taking in anything going on around him. It was like someone had flicked a switch in his head" and he "had begun to withdraw into his own, self-contained universe".

Step 6: Mum struggles to get anyone to take her concerns seriously. Her husband might think she's worrying about nothing and that no child of his could possibly be anything less than perfect. All the doctors she encounters are callous and all the other professionals are harsh and unhelpful. Eventually one special therapist or teacher (but not a medic) comes along who understands and for the first time, really listens.

Step 7: After much effort and heartache, Mum is devastated to learn that the explanation for all the child's problems is this terrible curse known as Autism.

The NHS would fail him:
" Left in the hands of the NHS, she points out, Konstantin would so far have had little more than speech and music therapy, ‘neither of which would be giving him the skills that he needs to survive and have a life of dignity. Children on the autistic spectrum need to be taught how to fit into society, and the real cruelty comes from neglecting to do that.’"
My autistic son has never had any form of ABA(TM) and yet he is living a life of dignity. Nor is it cruel to ask that society accepts neurological diversity. 
And here comes the devastation: 
"a developmental paediatrician confirmed what she had not wanted to admit, even silently to herself – her son was indeed on the autistic spectrum. ‘I felt as though my heart was being ripped out,’ Tanja recalls. ‘My mother was with me, thank goodness, and as we left the hospital, I was physically sick. I am a fighter by nature but in those darkest hours I definitely became unhinged.'"
Step 8: Just so we know how hard their lives are, how terrible this Autism thing is, several examples of the child's terrible behaviour are described, the tantrums and self-harm, the strange humming and abnormal interest in trains. This makes the book "gritty" and "unflinching" in the newspaper book reviews and is generally thought of as a good thing.

This child is so very young that Step 9 detailing tales of violence is missing but his strange otherworldly behaviours are outlined:
"his speech regressed and he no longer responded readily to his name", and "in the weeks leading up to [the child's] diagnosis he had begun to walk on tiptoe and repeatedly pull his hair. He also opened and closed doors incessantly and became obsessed by pushing buttons on electronic toys."

Someone cure that child stat!

Step 10: The warrior phase commences. Mum finds out stuff the doctors don't know, or didn't want her to know. She arms herself with superior knowledge, garnered from a motley crew of brave mavericks or comes up with some self directed plan, and goes medieval on the autism.

Step 11: Mum is a lone crusader, challenging authority and staying strong and calm in the face of what to ordinary mortals would be insurmountable obstacles. But Mum reveals the real terror she felt, the depression and anxiety, the tears and sleepless nights, all due to the autism which has seized her child and holds him or her hostage.

"[Mum's] quiet confidence is centred on the conviction that, while there is no ‘cure’ for autism, she is providing the next best thing for Konstantin – a radical, tough-love therapy known as Applied Behaviour Analysis (ABA)." 

"However as she began to seek help, Tanja also realised that she was facing an uphill struggle. In the US, ABA is tried and tested – successive studies have shown that half of children given full-time ABA tuition early enough start school  and many need no further therapy at all. The other half make significant progress, too, reducing their need for special needs support. ABA is endorsed by the American Medical Association and in the majority of US states health insurance companies are mandated to cover ABA therapy. But in the UK, the National Institute for Health and Care Excellence has yet to provide ABA as an option for the treatment of autism. Its official line is that it cannot recommend ABA because a review has found no evidence to support it."
It is true that NICE, after a thorough investigation of the claims and the actual evidence decided not to recommend ABA. But another claim in this paragraph needs to be countered: there is NO evidence whatsoever that 50% of children who receive early and intense ABA ever become "indistinguishable from their peers" (whatever that means). That is an utter fabrication based on a poorly written study from way back in *1987* which combined 40 hours of intense therapy with harsh punishments. Do ethics matter? As I have written before, why are standards so very low when it comes to autism?

And another point to make, when lauding Lovaas as a pioneer, bear in mind that he first trialled his ABA as a gay/trans conversion therapy.

Step 12: The intervention phase commences. The child gets older and matures, hopefully with lots of love and good education as well. But the intervention is credited with effecting a miraculous cure.

Step 13: The story ends by recalling just how far they have all come and how it would never have been possible without x,y or z (ABA, the companionship of a Golden Retriever or certain biomedical treatments). The child is said to be normal or recovered, as measured by a place in the Valhalla of this type of autism parent - mainstream school.

So this child, aged just three years old, is undergoing seven hours of ABA tuition, five days a week. Instead of calling social services the Daily Mail asks that we donate to her charity so that yet more little autistic kids will be subjected to the same. "‘He is using every ounce of his brain to do the work and, by the end of the day, he is exhausted,’ says Tanja."
I do not admire or condone this.

But lets see how if the template still holds:

"'...the transformation has been astounding.’ Before starting ABA, Konstantin had become so unsettled, he was incapable of sitting still to eat, read or watch TV. ‘If you took a toy away from him, he’d scream for an hour, and when he woke at night, he howled the house down,’ says Tanja. ‘Within a week of starting therapy, he was making eye contact and engaging again, and within a couple of weeks he was toilet trained, which I had begun to think would never happen.’ Eighteen months on, he is content and compliant and plays happily with his sister"
The child is only three years old! How much of this can be attributed to ABA and how much to natural progression? My son is 14 and can do all sorts of things he couldn't manage when he was 2! Also, I strongly oppose any treatment that has "compliance" as a goal. Too many disabled people have suffered as a consequence of early compliance training.

I have decided though that my template though needs another step:

Step 14: pay now or pay later!

This step is exemplified in the following horrible paragraph:
"ABA is undeniably expensive. A full programme, whether carried out at home or in one of the handful of ABA schools in the UK, requires intensive teaching for up to 40 hours a week, 49 weeks of the year, and costs £45,000 annually, ‘which sounds a lot, but it is less than the £150,000 to £200,000 a year costs of residential care for young autistic adults once they become too big and aggressive to live at home,’ Tanja points out. (A recent study by the London School of Economics and Political Science estimated that autism costs Britain £32 billion a year, more than heart disease, strokes and cancer combined – making it the nation’s costliest medical condition.)"
"Too big and aggressive to live at home"! What a revolting statement. This sort of argument is particularly galling. There will be a high cost to provide appropriate lifetime support structures for some autistic people, and so what? Early ABA for all will not change that. People are entitled to the help they need as citizens whether they have a disability or not. The UN Convention on the Rights of Persons with Disabilities points of the problems of  "putting a price tag on the basic human rights for a significant segment of the population".
Furthermore, "it is actually good economics to ensure that disabled persons are able to live up to their potential. When there are no obstacles in their way, disabled persons are employees, entrepreneurs, consumers and taxpayers, along with everybody else."

The article ends:
"For Tanja, life may no longer be whimsical and carefree, but it has resounding purpose. ‘I believe there is a reason why Konstantin was given to me,’ she says. ‘He is the most sweet-natured and loving boy and he is living proof of what can be achieved. If he can deal with the challenges of autism, then so can I. So every day, we carry on and we count our blessings.’"
Life has purpose for all of us. Being mother of a disabled kid makes you no more special or worthy than anyone else. I count my blessings everyday too. I just wish that the sort of autism-mum story exemplified by this article would no longer be given a platform. It's beyond time to amplify the voices of the real autism experts, the people who are themselves autistic.