2009 started off beautifully for my family. I gave birth to our third baby in as many years that February, a beautiful baby girl we named Isabella, and life continued on at its usual frenetic pace for me as the stay at home Mum of three children so close in age. Bella’s big brother Stephen and big sister Micah adored their “baa sissy” (baby sister), and all seemed right with the world.

One Friday afternoon soon after she was born, I dropped Bella off to my Mum and Dad’s place so I could go pick my husband David up from work, and Stephen and Micah from preschool. There was a note for us beside Stephen’s name on the sign-in sheet to please see the centre director. A little confused, we found her in Stephen’s room, along with the head teacher of that room, wanting to have a chat with us about Stephen’s development. He had developed normally and as expected up until the time he was about 16 months old, then he lost a lot of the language he had previously acquired and became sullen, withdrawn from the world, and found it very uncomfortable making eye contact with people. Being our first child, we had no benchmark, and thought perhaps it was just a phase he was going through, that he would return to his normal bright, engaging self in time. We shared this with the centre director and head teacher, and they in turn gave us a list of their concerns about how Stephen was doing – he would jam himself into impossibly tiny spaces to escape the hustle and bustle of the classroom on a regular basis, his speech was minimal and was more or less repetitive, indecipherable baby babble, he had no social awareness and would aimlessly wander round the classroom, not wanting to play with the other children, preferring to inhabit his own little dreamland. The list went on. I was shattered beyond words, and went into a period of intense grieving. I berated myself at the time for being silly, but have since found out there was a lot of unspoken mourning going on in my family, and that I wasn’t alone in my sadness.

Through this fog, I realised I needed to get Stephen into our GP so referrals could be made to the right people, and we could get some answers as to what was going on with him. The GP immediately agreed something was quite remiss with Stephen and duly sent off three referrals to our local hospital – one to the paediatrics department to assess Stephen’s development as a whole, one to the ophthalmology department to check the cause of a sudden onset squint he had developed a couple of months previous, and one to the ENT/audiology department to see if the cause of Stephen’s delayed speech was perhaps a hearing problem. Letters came back advising us he was on waiting lists for all three services, so we sat back and waited patiently for Stephen’s number to come up, as it were. The audiology and ENT departments were the first to contact us with an appointment, and while Stephen was unwilling to co-operate with audiological testing, the ENT specialist was able to deduce Stephen suffered from quite significant glue ear and he had surgery to insert grommets within a matter of weeks. The wait for appointments with a paediatrician and ophthalmologist continued.

In amongst all this uncertainty, Stephen celebrated his 3^rd birthday, we heard he was to finally be reviewed by the paediatric ophthalmologist, and he had his 3 year Plunket check. The Plunket nurse was straight up with me – “Kate, to me it looks like Stephen has some form of high-functioning autism”. I was by then in a place where I could accept what she was telling me, rather than brush off her concern. She also made a referral to Special Education, for Stephen to receive early intervention, speech language therapy and teacher aiding services.

The day of Stephen’s appointment with the paediatric ophthalmologist came around fast. I got my Mum to come with me; Stephen was quite a handful to take out in public by myself and I appreciated her help. I thought the appointment would be pretty straightforward, maybe Stephen would need a patch to help correct the squint, and that’d be it.

How wrong I was.

The ophthalmologist did a few checks on Stephen, popped some dilating drops in his eyes, and we were called back after half an hour for him to take another look at Stephen. My heart leapt up into my throat and tears stung at my eyes as he told us he was observing substantial bulging and swelling around the optic nerves at the back of Stephen’s eyes, that he was ringing the paediatrics team in the childrens’ ward, and that we were to go there immediately after our appointment with him. I kept moving and talking but inside I was numb. I didn’t have a medical background but I knew those symptoms suggested my precious little boy had a brain tumour.

For the next handful of days Stephen and I spent our days at the hospital while he had a battery of tests, including a CAT scan, a lumbar punch, several blood tests, and eventually a MRI scan. David had to attend a block week for the Diploma in Teaching which he was (is!) studying by distance in the middle of it all, so as he wasn’t able to support me, my parents agreed between themselves that one of them would always be with me for when, not if, the news that Stephen had a brain tumour came. My elderly grandmother who had had three hip replacements wanted to be seen to be doing her bit supporting our family at our time of crisis, so she came over to our place each day and looked after Micah, who wasn’t quite 2 at the time, and Bella, who was 6 months old. It was so humbling and heartwarming to have so much love and support at a time where I felt like I was dying inside all over again.

I prayed around the clock for my wee dude and continued doing so as he was put under anaesthetic for his MRI. He had been put through so many invasive procedures over the preceding few days and lashed out as we held him down to go through another. I tried to be staunch for Dad, he was with me and found the whole procedure very upsetting. We sat outside the room where the MRI was being done in the silent, sad knowledge we’d know for sure that Stephen had a brain tumour soon. The radiographer called me as Stephen was waking up and quietly whispered “we found no sign of any sort of a tumour” to me as he passed by. No tumour? My prayers had been answered! But what was it that was making Stephen present with all the symptoms of a brain tumour then?

We went back to the childrens’ ward and the paediatrician and paediatric registrar who had been looking after Stephen confirmed to us that Stephen didn’t have a brain tumour. Tears came again; this time though, they were tears of happiness. Instead, he had a condition called idiopathic intracranial hypertension (commonly known as IH), which is a neurological disorder not very often found in children, especially those as young as Stephen was. He didn’t need to have a shunt inserted to relieve the pressure (thankfully), and the condition has carefully managed and monitored by Stephen’s paediatrician.

So it was through Stephen’s brush with IH that we got in the back door with the paediatrician. Once we got Stephen on an appropriate course of medication for his IH, I raised the issue of Stephen’s many autistic tendencies, and his paediatrician agreed it was certainly something that warranted being looked at in depth. It was about this time too that we heard from Special Education. An early intervention teacher came over to our place and did a series of assessments on Stephen, all of them showing deficits in areas that positively screamed autism. By now, I knew in my heart Stephen was autistic too and in a strange way it gave me satisfaction to know I wasn’t imagining some of the things that were going on in his life. I looked forward to sitting down with his paediatrician and hopefully getting an official diagnosis for Stephen.

The date for that official assessment came and I will never forget it – 26^th November 2009. I look on that day as the first day of the rest of Stephen’s life. The paediatrician quickly proffered a diagnosis of high-functioning autism, high-functioning meaning that Stephen isn’t as badly affected as others on the autism spectrum. I was delighted, and you might think that strange, but we had that answer we had been seeking and it was the key to Stephen receiving many services he was entitled to.

We were also very fortunate to have a switched-on advocate in the form of Stephen’s early intervention teacher, who sent out referrals to our local NASC so that Stephen might receive some respite care, in addition to letting us know about other services like Riding for the Disabled. We were incredibly grateful as parents of newly-diagnosed children often feel like they’re left to discover a lot on their own accord. At about this time, Stephen was also diagnosed as being vision impaired and was accepted onto the roll of the Southland vision resource centre, who are a satellite campus of BLENNZ (Blind and Low Vision Education Network New Zealand). Stephen’s resource teacher vision (RTV) has been another godsend in helping to make the environment at preschool more user-friendly and accessible for Stephen as a vision-impaired learner, as well as being a vital member of Stephen’s “support crew” who is vitally, and genuinely, interested in Stephen’s health and welfare.

From then on in, I’ve been armed with a passion to learn as much as I can about the conditions affecting Stephen and be as proactive and assertive an advocate as I can for Stephen, which hasn’t come easy or naturally but I’ve made it happen! I linked up with my local branches of Autism New Zealand and Parent to Parent, which has lead me to participate in events like the Southland May Day disabilities expo in 2010 and 2011, the Parent to Parent 2^nd Generation workshop in Auckland in July 2010, the Autism New Zealand national conference in Wellington in September 2010, and more recently, I’ve joined the Special Education Southland parent reference group as the represetative of a service user in an early childhood setting, and have just completed a series of four workshops facilitated in Wellington by SAMS, called Partners – Influencing Change, which helped me to learn more about being an effective advocate and how to go about making meaningful change in the disabilities sector. I’m also the secretary/treasurer for the Southland branch of Autism New Zealand. So life sure is lived at breakneck speed for my family and I! I am very lucky to have the unwavering support of my extended family who are always willing to step into the breech and help where and when needed, as well as the love and strength of David. We’ve been together for 13 years and married for 8 of those this year, and while raising three children -including one who happens to be autistic- so close in age can be pretty tough, we sometimes have to stop and remember our relationship was the rock on which we built our family, so we have to take the time to keep it strong and durable against the battering tide of life and the highs and lows that come with it.

Looking back, I came full circle from being in complete denial to openly embracing the reality of us having an autistic son. It’s something I’ve never hidden and I’m unbelievably proud of the progress Stephen’s made and continues to make each and every day. He receives help from an early intervention teacher, speech language therapist, educational support worker (otherwise known as a teacher aide), paediatrician, occupational therapist, ophthalmologist and resource teacher vision, and has a fantastic teaching team on his side at preschool who strive to provide an inclusive classroom environment for Stephen. He’s treated just like every other child, but with understanding. We love that. We’re now just under a couple of months out from Stephen turning 5 and starting at a mainstream school. We’ve just found out our application for ORS funding for him from the Ministry of Education was successful, and it’s a huge relief to know he’ll have the help and support he requires to make a successful transition from preschool to school. He’s the most wonderful little boy and we’re blessed to have him in our lives.

http://bat-bean-beam.blogspot.com/2010/09/questions-asked.html

This is not our daughter’s story, so much so that I won’t even call her by name. It is the story of sixteen months spent battling to ensure that she have access to the same education system as everybody else. It is the story of the questions asked and the time spent waiting, of endless evaluations and constant pleading. It is one story, therefore a partial story, with no claims to representing a universal experience. But it’s not an untypical story. We’re likely, if anything, to have had it easy. It is also a story with a happy ending, however provisional, and it pays not to count on that.

The story begins in May of 2009, when steadily growing concerns about untypical patterns of behaviour and development make us approach our GP and the local kindergarten teachers, no longer to ask for their professional opinion but rather to insist for referrals. We had deferred to their expertise and initiative for too long, waiting to be told. We didn’t know at the time what we do now, namely that our child presented with textbook signs of autism according to the yet to be released national Autism Spectrum Disorder Guideline. To the extent that I hope other parents in our situation might be able to take something out of this story, it is above all this: don’t wait. Don’t labour under the illusion that, should your worries turn out to be well-founded, your child will be cared and catered for promptly. The waiting lists are appalling, and it pays to get on to them as early as you can.

The pattern of all our subsequent dealings with the public service in this area establishes itself right from the beginning: a prompt initial contact followed by a seemingly endless wait for actual support and intervention. The Ministry of Education assigns us a speech therapist who comes to our home in a matter of days for an initial assessment of the situation. She seems courteous and capable. She asks us lots of questions, and we welcome them: it feels good to talk to someone about our concerns, to get some things off our chest and receive some basic advice. But as for the response that will follow, things get more complicated. To turn the suspicion of autism into a diagnosis and access the services offered by the health authorities, we need to see the Child Development Team at our local hospital, in six to twelve months (it turns out to be twelve); while the Ministry of Education will deploy their optimistically named Early Intervention Team in approximately six months (it turns out to be nine). There is no interim provision, no half measure: so long as our daughter can tolerate being at kindergarten – and she does, at this point – it has to suffice.

So what do you do? You wait. Except you can not, in good conscience. And so you seek other public providers (more on that in a minute) and failing that, you go privately, if you can. And here comes the second piece of advice I’m prepared to give: ask your doctor to refer you to a private paediatrician, preferably one that is sensitive to the needs of families in your situation. If you don’t have the money, borrow it from relatives or friends. If the paediatrician finds that your child has special needs, they will fill out a form for a disability allowance. It’s only forty dollars a week, but it will offset the cost of the visit in a couple of months, and thereafter it will help you pay for things. You’re not going to run out of extra expenses any time soon.

That’s the easy part. Now you have to find somebody to help your child at preschool, at kindergarten and/or at home until the Early Intervention Team creaks into action. And here’s where luck begins to tell: we live in a big city, we are involved with an excellent (public) primary school, we know people, including families with children on the spectrum. Class operates for us in more ways than one: it’s not just that we can pay for the private assistance, but that we know whom and how to ask and we have certain expectations of institutions. Agencies that cite resource constraints don’t get much sympathy from us: we know that the failure of state services to provide is the product of political decisions and rarely if ever of unavoidable circumstances. Should the centre create difficulties around the placement of our support person, we’d know how to raise our voice and how to remind them of their obligations. We are not easy people to deal with. We know that you cannot afford to be.

But in no way do we beat the system. On the contrary, by seeking private help we bail it out, prolong the state of permanent crisis that never quite results in total rupture. We should be sleeping on the Minister’s doorstep. We should be organising and demanding change. But it is a hostage situation, and the hostage is our child. Thus the system enlists us, the middle class families and above, who will cough up and provide, and this will prolong the status quo for everybody else.

We know that we are privileged, yet we feel powerless. The wider social implications of our actions are incompatible with our stated goals. We have been privatised.

It has not been for want of knocking on every available door, although the public provisions around autism are notable for the staggering lack of coordination: sometimes you will be made to feel like a trailblazer, as if nobody had ever had the same needs as you. Autism New Zealand ought to be anybody’s first port of call, but even they struggle to keep up with the constant changes in personnel and criteria. So for instance we are told to approach the Needs Assessment and Service Co-ordination Service (or NASC – these people and their bloody acronyms) but discover that our daughter doesn’t qualify unless she poses severe behavioural challenges or she has been found to have a cognitive delay by the Child Development Team that at this point – remember – we’re not due to see for several more months. I speak on the phone to another agency that could be of some assistance to us, Tautoko, and I can tell that the person on the other end of the line is also trying to make me say that we struggle to cope with our child’s behaviour, but it is a box that she just doesn’t tick, at least not in the terms that are offered to me. And so the man tells me – in September of 2009 – that they will not get around to seeing her until February of 2011.

With any luck, she might be a different child by then. A more difficult one.

This last remark is not meant glibly: as the Autism Guideline plainly states, early diagnosis and support are crucial to avoid more complex, more invasive and more costly interventions later. This knowledge makes the time spent on our several waiting lists that much more distressing. But time does pass, because it’s what it’s good at: and so 2009 turns into 2010, and in spite of all those initial contacts and assessments the actual support that our child has received thus far, eight months into the process, has all been financed by us. But the good news is that nine teacher aide hours per week from the Early Intervention Team will kick in as soon as kindergarten comes back from the holiday, plus the time necessary to actually find the aide.

Along with some resolutions, 2010 brings more evaluations, more questions, and with far more of an edge to them. This is the real deal: an actual diagnosis, medium-term decisions about support entitlements that will make an enormous difference for our daughter’s access to education as she prepares to move into primary school. We have second-hand knowledge of the beast they call ORRS, but we’re due to meet it face to face. A lot will depend on the outcome.

But before we get to ORRS, we have to meet with the Child Development Team at Wellington Hospital, so they can tell us what we already know. It is a long meeting, and whilst we are used by now to discussing our daughter as if she wasn’t in the room, this time we are probed much more deeply, and expertly. There is nothing especially tactless about the interrogation, other than the unwelcoming room itself, other than the strain of having her there, for over two hours, wondering how she feels, what she does and doesn’t understand, what she will and won’t remember.

The alternative, to have determinations made without talking to us, or without seeing her, would be worse. But it’s especially difficult at times like this not to feel that your child is a problem, and that you may be at fault: for not having done enough, for having passed on the wrong genes. None of these thoughts have to be rational, let alone justified, to affect you. So while we answer the questions, many of which are unavoidably of an intimate nature, we feel that we are all being examined, the three of us, and we figure, Justine and I, that we are the fortunate ones, for we are intelligent and knowledgeable and resourceful, for we found ways and had the means to intervene. How will other families feel and fare in that room? Will they also pass muster?

One week later, when we are summoned again to the same room – this time without our daughter – they tell us out right: you’re doing all the right things, we have no recommendations for you. (They are pleased with us!) Oh, and yes, your daughter has autism. That phrase in the report is actually in block letters, and you could read a lot into that typographical choice if you were so inclined, about the need to label, its usefulness, and the fear of the label.

We share this ambivalence, although personally I prefer using the word autism than not, but when it comes to different institutions, it is a very sharply edged business. When the Ministry of Health uses the word autistic – and I’m not suggesting for a minute that it does so lightly – it doesn’t have to deal with the consequences; its job is more or less done. When the Ministry of Education is faced with the word autism, it means extensive interventions and costs and resources to be allocated over a potentially very long period of time. And so what Education does, is it discards the word, for it is unfair on the child, and besides it is a spectrum and moreover what we need to really focus on are the needs of the person, the whole person, not the label, see?

Thus we find – and even as I write this I can’t believe that we ever thought otherwise – that the entire process of the diagnosis was immaterial. The only thing that mattered all along was ORRS.

ORRS stands for Ongoing and Reviewable Resourcing Schemes, a name that was probably concocted by the same chap who came up with Needs Assessment and Service Co-ordination Service. Both denominations are elegantly deceptive, for neither the co-ordination service does any co-ordination, nor the resourcing scheme provides actual resources. Quite the contrary: the function of ORRS is to deny disabled children access to resources, therefore the right to an education. Successive governments – both Labour and National – have lied about this, telling us that the scheme wasn’t resource-based but rather needs-based, and sometimes even telling us that it was both things in the same sentence, as Dr. Cullen did in the 2008 budget:

This initiative, which is demand-driven, increases the number of students provided for by the Ongoing and Reviewable Resourcing Schemes (ORRS) from 6,700 students in 2007/08 to 6,950 students in 2008/09. (My emphasis.) 

It’s a sliding scale of need, see. And if you’re child 6,951, then it doesn’t really matter what your needs are or whether you fit the stated criteria: you miss out. The principle was captured quite beautifully by Tom Scott in this 1995 cartoon for The Evening Post sent to me by Hilary Stace. Things haven’t changed a bit.

How it works, is that each child has to compete for one of the available slots. Think of it as the competition for a job, or the tender for a contract, where you have to write the curriculum and put together the portfolio that gives you the best chances of success. Because it is a competition, it makes perfect sense to place the burden of articulating and demonstrating the level of need entirely on the applicant. So for instance if we could go through simply by waving our daughter’s autism diagnosis and its extensive supporting report, then it would be unfair on the children without a diagnosis. (And I am quoting verbatim from an intelligent and compassionate professional involved in the process to whom evidently this seemed perfectly reasonable.)

No: we have to tell our daughter’s story, again, and in even more harrowing detail. To the education system, at this time, she is a problem, and nothing else. Where am I going to find words to convey to you how much it pains us to have to go along with this? I can not. But go along with it we must, for the alternative is that she won’t receive the support that she needs, and that doesn’t bear thinking about. So, with the invaluable guidance of her early intervention teachers, we select the criterion that best fits her profile, and we start writing, pretending not to have noticed the failsafe mechanism, the clause that they could use to deny us. It might as well have been written by Joseph Heller:

This criterion is not for students who, despite major difficulties with communication and/or social behaviour, can be engaged to participate in meaningful learning in the curriculum. 

What’s ‘meaningful learning’, and who decides? Clearly what we are talking about here is not the right to an education, but to some education.

But you cannot allow yourself to think about that. There is work to do. We enlist the help of all the people whom we have employed to work with our daughter, and of her psychologist (also private), as well as her teacher aide and early intervention staff. They all write thoughtfully and truthfully, as do we. Yet it is a betrayal: none of us see this wonderful little person like that, solely for the things she cannot do, for her impairments, for her inadequacies, for her failure to be like her peers. We see potential, intelligence, passions that if nurtured and allowed to develop could lead, yes, to meaningful learning. But they don’t fit the narrative, and the narrative is the only thing that matters at this time.

It takes thirty hours on average to put together one of these applications, under the expert guidance of the lead early intervention teacher, plus the time it takes to review it. You may want to think of the resources that it entails, all this gate keeping. It’s all money that could be spent elsewhere, quite aside from the pain and the distress that it causes. But we don’t care, not now: we just need an answer. We wait.

It is at this point that the story ceases to be our story, and becomes another family’s. Who is child 6,951? How are her needs different from our daughter’s? How will she be cared for? Will her parents have to sell the house to pay for her teacher aide? Will they have to move to a poorer area, therefore to a school with even fewer resources? Or are they already there, and is that in fact why they missed out? Here’s EJ Ryan in the Victoria University of Wellington Law Review:

The overwhelming issue with the high needs categories is that the narrow criteria mean that many students are not included within them. Both the school and the parents of a child with special educational needs must provide extensive written applications for ORRS. Any assessments of the child made in support of the application are paid for by the parents. The Wylie Report noted that just under half of the current applications succeed. Particularly worrying was the fact that the number of applications that failed from low-decile schools, and from Maori and Pacific Island students, was disproportionately high. This supported an observation that the success of the application was perhaps based more on an assessment of the written application, than on an examination of a child’s needs. 

Ryan wrote this article in 2004. The Wylie report was commissioned in 2000. Tom Scott drew his cartoon in 1995. Has anything changed? It certainly doesn’t feel that way. The system still seems designed to respond to an arbitrarily low number of cases, and to favour implicitly the families that are wealthier, more articulate and capable of greater advocacy. Or, to put it more simply, it still is discriminatory and racist. For how long are we going to tolerate this?

But I’d lie if I said that our prevailing emotion was anger, or outrage: most of the time we are too tired for that. It’s only been sixteen months, but the stress of these constant negotiations has taken a steady toll. We hope that our friends understand that it’s why we don’t call as often as we used to, or why we don’t always return their messages. We are exhausted. And you will be too, as this post crawls towards its three thousandth word. I just need to make one final point.

There is an aspect that most people in our situation will mention, and it duly came up in Penny McKay’s excellent recent programme on special education for Radio New Zealand: that you are always supposed to be grateful for the support that you get. And we are, truly, I hope that everyone who has worked with our daughter knows that. But that expectation is another source of stress, and it is connected I think to the way our public institutions see us. To them, we don’t have rights, we have needs. By responding to our needs, the institutions acquire the right to appraise themselves of everything concerning our lives. Our recent dealings with NASC illustrated this quite sharply. Post-diagnosis, when we could finally access their service, it ought to have simply been a matter of lodging the Child Development Team’s report. It had the whole story, and our eligibility criteria. But no: they had to send somebody to our house, and we had to tell her the whole story, again, answer all those at times brutally intimate questions, and for what? Not to get a sensitive and tailored intervention based on that information, but to receive 71 dollars a month, twelve times a year, for one year, to help pay for some of the therapies that it is up to us to organise.

I felt, at that point, that they owned us: as I’m sure that the disabled and the unemployed and the sick are often made to feel. It’s the price you pay for having needs.

All the images except for the Tom Scott cartoon are scanned from the New Zealand Autism Spectrum Disorder Guideline.

Autism and guilt

In the full print story, Latta dishes out jumbo servings of his usual faux common-sense parenting advice, lurching into this bizarre statement:

“But I’ve been around the family area more than 20 years, long enough to watch fads come and, and now there are huge numbers of kids being told they have features of autistic syndrome disorder [sic].

“Without doubt, autism exists. I’ve seen good research on that. But people who don’t know enough about it are diagnosing it. I don’t know enough about it to diagnose it or work with children who have that diagnosis, but I know people who know a lot less than me who are diagnosing it – kindy teachers, teachers, psychologists, therapists.

“This is a small country, with a small number of people qualified and able to diagnose this. Right now, there are lots of kids who are not autistic, they are just different, but what happens is these parents have these labels thrown at them.”

So Latta, who can’t even get the name of the condition right, knows more than those unnamed “psychologists” and “therapists”? I think it’s actually quite clear he doesn’t, and that he knows very little about how ASD diagnoses are actually made in this country.

“Just different,” can indeed be a reasonable proxy for autistic spectrum disorders at the milder end of the spectrum, but that hardly means a diagnosis is irrelevant. In my experience – and I have two very different children diagnosed as Asperger Syndrome via very different routes — a diagnosis, correctly given, is a gamebreaker.

It is but a systematized collection of related symptoms – not all of which will apply to your child – but it gives you somewhere to go. Somewhere that will almost certainly lead to something better than Latta’s feeble “common sense”. So allow me to point out to Nigel Latta that children who are “just different” may well have a very different idea of what is common and what makes sense.

Update: The full story has finally been published online.

 So began a lifetime of therapy. Getting him out of hospital was hard enough, as his feeding was very difficult to establish, and we were mostly feeding him expressed milk through a nasal gastric tube. But we stuck at it, and finally got the little man home.

 Auckland hospital provided a physiotherapist who came to the house, as it was seen as highly likely Marcus would need extra care. Likely turned to certain as he developed, and continued to be well below his age for weight and gross motor development. We were encouraged to learn as much as possible from the therapist who opened our eyes to the tender art of weaving therapy into every activity.

 Curiously, the underdevelopment of gross motor led to heightened development of other areas. Marcus never crawled, probably on account of weak arm and shoulders, so he spent a lot of time sitting in one spot playing intensively with toys, and learned very quickly that he could use his mouth to get various things. He talked well before he walked.

 Because the cause of his stroke was never known for sure, and could not be attributed to a pre-existing condition, we were encouraged by the obstetrician to make an Accident Compensation Commission claim for him. I’m often struck by just how different things might have been in a country where medical accidents can only be compensated for by suing the doctors, who are likely to deny that it was an accident to whatever extent they can – but here the very doctor who delivered him was instrumental in pushing for the successful claim, and Marcus now has lifelong coverage for pretty much all costs which are linked to his accident.

 Upon the acceptance of the claim, the level of care for Marcus jumped hugely. He started to receive regular visits from physiotherapists, occupational therapists, speech and language therapists, and dieticians. He has made huge progress in every area, putting on weight, gaining strength, learning to crawl, walk, run, climb, use toys that require hand and finger strength, learned to talk about what he is doing, what he has done, and to plan what he will do.

 But he has shown for over a year now some features that led his pediatrician to give a tentative diagnosis of  ‘on the autism spectrum’. This manifests in familiar ways, that he prefers highly repetitive activities, loves to repeat long lists of things he has learned by rote, takes very little notice of other children, and generally avoids contact with them. For instance, he would often sit and play with the telephone book for up to an hour, just flipping through the pages. Or he would speak to anyone who would listen at great length about ‘Mouskatools’ which he had seen on TV, pretty much repeating the lists over and over. Or he will just stand giggling and flapping his arms, staring at a wall, for many minutes at a time.

 The therapists have generally sought to discourage this kind of behavior, typically by encouraging him to do something else more ‘constructive’. They even made the harsh call of suggesting we take books away from him for a while, because they were distracting and he was not using them as books, but as tactile toys. A bit of soul searching was required for that. This worked out very well in the end, though, his range of play expanded very rapidly after the week or so it took him to get over the fact that there was not a book to be found anywhere. We’ve given them back now and his obsession with flipping the pages is gone.

 It is always hard to know just how much of the improvement comes from therapy, both direct from the therapists, and what we have learned to apply, and how much of it comes directly from Marcus, who has a stubborn nature which enables him to persist at tasks until he attains some kind of mastery. My opinion is that it is all of these things, that therapy has helped a lot, that his persistent nature could be nature’s response to his accident, as well as somewhat innate, and that our trust in the therapists and attempts to incorporate their teaching into everything we do with Marcus, have all contributed to his ongoing improvement. I’m very hesitant to generalize anything about Marcus to other autistic children, and can only say what we’ve done that has helped to encourage development towards a stronger, more able child who can handle socialization.

 It’s been very hard for me to finish this story, the above paragraphs were written months ago, and yet I could not commit to publishing it. I guess I have to be honest that I’m conflicted about the condition itself. Marcus is only ‘mildly’ autistic, and it’s possible that love makes me blind, so that I only see the things he does that indicate autism as parts of his character. It seems rough to want to train these things out of him. And yet, the training has seemed to work, the features that seemed autistic being generally discouraged (usually by changing the focus of the activity when he seems to have fixated on something), has expanded his range of play, talk and movement. I have no idea how much of this would work with other autistic children, in whom the condition is more innate, and more severe. Each child is different, but all are beautiful, all need the time and love of their family. However they turn out.

Ben Wilson

One Monday in mid-June of 1996 I took the train from Milan to Vicenza and found my way to the street address printed on the call-up card I had received just a few days earlier. A little surprised to discover that it was an ordinary looking residence, not the office or hospital building I expected, I rang the bell. A tall fellow in his mid-forties opened the door, looked at me for a few moments and declared, with perfect deadpan delivery:

“You must be Franz Kafka.”

And thus began my year of forced employment in the mental health sector.

I look back on it with fondness now, but the beginnings were difficult. Being suddenly drafted into such work – in the time-honoured and very deliberate fashion that the Italian army had of finding a placement for conscientious objectors at the last minute and with no forewarning, let alone training – was a little traumatic. Also, initially I had nowhere to stay but the house itself: I was the first objector in the history of that particular placement who came from out of town, and there was no other accommodation. The residents – half a dozen adult males, mostly schizophrenic – had but a vague concept of personal boundaries or working schedules, and since there were no nurses on duty at night they figured that waking me up to attend to their needs would be okay. I wish I could tell you that I took this entirely in my stride.

There is nothing quite so unsettling as a mind that cannot be read, because it works differently. Isn’t that where the stigma of madness comes from? But then you realise that for the mad person every other person on the planet is a source of ambiguity and confusion, and you find yourself unable to fathom just how unsettling and distressing that must feel, and the loneliness that it must bring. Coming to that realisation enabled me to get a grip on myself and a sense of just who it was who actually needed help; at the same time, having managed to persuade my superiors to find me a bed in a nearby office building made the working conditions a little saner, as it were. But I still didn’t know what my job was. Formally I was a generic adjunct to the nurses on duty, with no specific tasks – which is just as well I suppose, seeing as I had no training. I spent time socialising with the guys, played cards with them quite a bit, helped one with his gardening, another with his job-seeking and his English, but it was hard to shake the feeling that I wasn’t the only one who actually benefited from the arrangement.

The inspiration for a more meaningful way to contribute came by way of food. At the house we got our meals delivered from the hospital kitchen, and it ranged from the acceptable to the barely edible, but for dinner – by which time I was mostly off duty – I had to rely on the mess-tins left earlier that day by the door of my office-cum-bedroom. These would sometimes contain actual foodstuffs, in the form of cold pasta or slices of roast beef with salad, but just as often it would be a cold lump of sauerkraut, or several hundred mushy peas, and went straight into the bin. At 2.5 Euro per day (no, it isn’t a typo, just the pay of regular soldiers) I couldn’t really afford to dine out, and I had no cooking facilities, so I had to smuggle leftovers from the house, if there were any. It was grim.

Except for Wednesdays, that is. Wednesdays were a whole different story.

My friend Marco and I had applied for the status of conscientious objectors on the same day, and received our call-up papers on the same week, eighteen months later, a matter of days before we would have had to have been declared free of any obligation. We were both placed out of town, which was rare and unfortunate enough, but at least we were in the same region, and the council of the small town where he worked had granted him use of a ludicrously large house. So I tweaked my timetable in order to finish early on Wednesday and we got to spend the evening together, which brightened up my week a whole lot. We decided (it was his idea, I think) that on each one of those nights we’d treat ourselves to a sumptuous meal. To be precise, we worked our way through a book of recipes by Manuel Vázquez Montalbán, the author of the Pepe Carvalho novels. I still have it.

And thus some time in the winter came the idea of incorporating cooking into my work at the house. The hospital food was awful but the ingredients were fresh, so would they mind sending those to us instead? And if we wanted to depart from the set menu, we could dip into our modest fund for social activities.

Now if you’ve never cooked with schizophrenics, it’s an interesting experience, and I’m sure it has well-documented therapeutic value when organised by people who know what they are doing. We just gave it a crack, basically, and it seemed to work. There was no compulsion to participate, nor an excessively rigid schedule. The only rule was that we had to eat what we prepared, even if somebody (I’m looking at you, Paolo) had dumped half a bag of salt into the pot for the pasta. For some of the residents, who had expectations of being able to move out and live independently in the short term, there was practical value; for others it was an activity to be enjoyed if they felt up to it, and that reinforced the learning to take care of oneself that the more professional therapists were trying to foster. Plus we really did have quite a lot of fun, which has to be an end in and of itself.

In what is possibly the longest preamble in the history of this very preambley blog: that’s how I came to learn to make pizza, from one of the nurses. It’s reasonably uncommon for Italians to cook it at home, since it can be purchased so cheaply at a bakery or pizzeria, but we couldn’t really afford it at the house and besides it was a very good group activity: it took time, everybody could be given a job, it was physical, and didn’t require too much finesse. Also, while the preparation had some structure and drudgery to it, there was room to be creative with the toppings. It quickly became our favourite recipe.

***

This time last year I made the obvious point that cooking can be a way of transferring ancestral knowledge, of making somebody partake of your culture. My mother puts it more succinctly when she says that ‘food is love’, a maxim whose value has become clearer to me since becoming a parent, and discovering that cooking with the children can be an important part of the family conversation. But a new and altogether less predictable turn of events has recently put this idea into much sharper focus.

The year has been dominated for us by the discovery that our daughter is autistic. That constellation of behaviours of hers that seemed puzzling, difficult or upsetting, as well as those that suggested she may have special abilities and an uncommonly sharp mind, have been given a name, and a fraught one at that. We are fortunate to have been exposed, through friends and advocates and our son’s school, to other kids on the spectrum and their families, and that knowledge has taken some of the edge off the otherwise frightening label. Besides her being wonderful and a very smart cookie, there are lots of positives in the care that Lucia gets and can be expected to receive, giving us every hope that she will grow to be happy in who she is, and equipped to make her own way in the world.

But for the moment there remains that challenge of connecting with a mind that is different, the struggle to learn to speak the same language and to understand the world as she sees it, which can be a cause of mutual distress, for her and for us; and conversely, the joy in finding a way to get through, a space where we can be ourselves with each other, and talk, if not quite in ordinary words, and share the same experiences.

There is her territory, of music and words learned by rote, obeying her rules – the few songs that can be played or sung or danced to, the few books that she will allow us to read to her, the cartoons that she can bear to watch – and then there is the world of interactive play, of drawing or mucking about with water and containers, or the trips to the playground, all with their own carefully negotiated boundaries. But for me personally (her mother has more success with a broader range of things) there is nothing that I find more rewarding than cooking pizza with Lucia. It’s at those times that I feel that she’s stepping into my world, as opposed to the other way around, and that she is at her most receptive to what I have to say and show her. It’s the attentiveness that most kids will freely give, but that with her needs to be won, and is all the more precious.

So here’s what we do.

For the base: 500g (four cups) high grade flour, eight tablespoons of extra virgin olive oil, two teaspoons of salt, one teaspoon of sugar, 25g of fresh baker’s yeast, 250ml (1 cup) of lukewarm water.

The quantities have been refined over several years, so I have every confidence that if you follow them to the letter, you will have success. The first thing to do is to mix the yeast and sugar in the lukewarm water, and let it sit for a while. It’s at this time that Lucia will ask for a wee bit of yeast to taste on the side, and remark that ‘sugar is sweet’. Ten minutes or so later, when it’s had time to start fizzing, she will put her ear to it and delight at the sound. In the meantime you mix the flour and the salt in a bowl (‘salt is savoury’), add the oil, and add the yeast when it’s nice and lively.

Mixing the very liquid mess thus created is one of Lucia’s favourite parts, although she seems quite ginger in the picture. Once the dough has become dry enough to be handled, place it on a chopping board or other suitable surface and knead it, incorporating more flower if it’s still too sticky. But remember, you want to err on the side of soft and moist rather than dry and stodgy. This phase is the key to the whole preparation and should take you not less than ten minutes. Technique-wise, you want to use your palms as much as possible. Allow us to demonstrate.

Once this is done, you put the dough back in the bowl, cover with a cloth and let it rest in a dark place for an hour or until doubled in size. Lucia is going to insist that you check often. What you’re aiming for is to go from this

to this

Then you return the dough to the kneading surface and give it a good bash. Seriously, just pound it for half a minute or so, you want to get all the air out. Place it back in the bowl, cover with the cloth and leave in a cool dark place for another hour. While you wait, you can start working on your toppings.

Mix together in a bowl 300g of boiled peeled tomatoes (tinned is fine) a tablespoon of oregano, a pinch of salt, a tablespoon of extra virgin olive oil. Slice or grate 250 grams of mozzarella and that’s your basic margherita topping ready to go. You’ll add to it as you see fit.

Once the dough has had time to rise again, it ought to be very elastic and easy to work into a disc or rectangle, depending on the size of your tray or dish. My preference is for a very thin base and I generally extract three standard rectangular oven trays from one dough, but if you’re not practised you can initially aim for two. Alternatively, the same base will give you one tray of focaccia (the procedure for that and some alternative toppings are here). Whatever you make, it needs to cook at the highest temperature that your oven will allow, preferably in no longer than fifteen minutes or it will start to burn at the edges before it’s had time to cook in the middle. That really depends on how good your oven is. Naturally, the cooking surface needs to be greased with olive oil, and the oven needs to be pre-heated (sorry, George).

That’s all there is to it, it’s nothing complicated although it requires a little application and some free time. Having to pay attention to and be explicitly aware of the learning opportunities that Lucia gets, I’d have to say there’s plenty that we can fit into that one activity: some manual skills, a sense of time and causation (she’s learning to watch the pizza cook through the glass door of the oven) and how ingredients are combined to form something quite different, the taste of each individual ingredient and how to attend to a complex procedure in which she is asked to verbalise each of the steps. But mostly what we get out of it is the time spent together, a time in which we are both happy.

Oh, and the pizza isn’t bad either.

Giovanni Tiso

29 January 2009 

Allan Peachey MP

Member of Parliament for Tamaki

Chair

Education and Science Select Committee

Parliament Buildings

Dear Mr Peachey

EDUCATION (NATIONAL STANDARDS) AMENDMENT ACT 2008 

I am writing on behalf of the board of Autism New Zealand Inc to express concerns about the Education (National Standards) Amendment Act 2008 which was passed under urgency in December. We had hoped to have the opportunity to make a submission to the select committee but were denied this opportunity because the Bill was passed under urgency through all its stages in two days.

This Act has serious implications for students with autism spectrum conditions and their families. But we do not think this has been taken into consideration by Parliament in passing this Act. In this letter we set out our concerns and ask some questions about the legislation.

There are two particular aspects that concern us for their potential negative effects on our children and families.

Part 1:  Increased fines for parents who do not ensure their children attend school, and extending the powers of prosecution beyond the local school board. 

Many students with autism have very negative school experiences. This could be due to bullying, the school not understanding their learning needs, sensory overload caused by the school environment, or a combination of these. Many students become reluctant to attend school to the extent of becoming school refusers or even school phobic. Others have been subject to ‘kiwi suspensions’ whereby they and their families are made to feel so unwelcome at the school that they find it easier to stop attending, although official procedures might not have been followed.

Whatever the cause, many students of legal school attendance age do not attend school. Many parents sympathise with their children as they see the stress the formal school environment causes.  But these parents are now liable for a $3000 fine on the second offence of not enforcing their child’s attendance. 

Will there be counter measures put into place to make school a more welcoming and appropriate environment for students with autism, and their families?

Part 2: Literacy and numeracy standards 

We have three questions about this section:

1. If all children are to be tested against national standards in New Zealand what provisions will there be for those with different learning styles, and for those whose strengths are not in literacy and numeracy?

2. We would like to know what extra support will be provided for children with special educational needs, including autism, in mainstream settings? All children with special educational needs (not just those with autism) are likely to need extra support to sit these tests and schools may be unprepared to enrol them as they will potentially drag their league tables down. Most children with autism and other special needs in

3. How will the testing regime impact on those in special schools, satellite classes and units? Will they also have the same tests and reporting requirements?

We are also concerned that this legislation is signalling that New Zealand will follow the No Child Left Behind policy of the Bush administration of the United States.

Temple Grandin, PhD, an adult with autism, has criticised the No Child Left Behind policy of standardised testing of literacy and numeracy for its negative effects on the teaching and learning of children with autism. Most autistic children have special learning needs, and many have strengths in areas beyond literacy and numeracy, while they may struggle with the narrow range of abilities being tested. But because the tests are publicly notified and the teachers must use them, there is little time for the personalised learning these children require. Some children in the

NCLB has recently been evaluated by the independent No Child Left Behind Commission. (Beyond NCLP: fulfilling the promise for our nation’s children, 2007 www.nclbcommission.org).

Their report provides valuable information for those of us interested in education of children with autism and special needs. NCLB came into force in 2002 with the admirable intentions of closing achievement gaps and having high expectations for all students. The Commission’s report approved the aims of the legislation but found it is not achieving its goals.

Why? Because, after intense research, they have concluded that what makes a difference are effective teachers (such as those who can teach and engage with a diversity of students), principals who provide strong community leadership, and schools that foster learning communities. They also found that those children with the greatest educational needs tended to get the least effective or most inexperienced teachers.  We in New Zealand already know all this and it has provided the basis of our teaching and learning policies for years. NCLB has now been shown to have done little to lower the numbers of high school drop outs and has even lowered achievement in some groups. One recent report details the unexpected consequences of threats of non-achievement on students, schools and parents, with manipulation of scores, inaccurate classification of students, and reduced flexibility in the curriculum. (Fetler, L, ‘Unexpected testing practices affecting English language learners and students with disabilities under No Child Left Behind’, 2008,  http://pareonline.net/getvn.asp?v=13&n=6) 

This is why we are concerned if the intention of the Education Amendment Act is to adopt an American system that has been shown to be deeply flawed.

I have attached two short papers from the Commission on No Child Left Behind (The Facts: ensuring students with disabilities achieve academic success and Teacher and Principal Recommendations: effective teachers for all students, effective principals for all communities www.nclbcommission.org) 

New Zealand Autism Spectrum Disorder Guideline

We would like to remind members of parliament and the committee of the extensive work done on the development of The New Zealand Autism Spectrum Disorder Guideline. It assessed the evidence about what works for children with ASD in educational settings and has found that the most suitable education setting ‘will be one:

• That provides adequate structure and gives the child or young person opportunities for contact with typically developing peers
• Where staff are well trained and have a positive attitude, expertise, understanding and a willingness to work in a team with the family
• That has the ability to be flexible in meting the child’s needs over time (Recommendation 3.4.3)’.  (NZ ASD Guideline, 2008, page 129).

It recommended that:

‘tests and other cognitive assessments should be administered  by a psychologist with experience and training in ASD (Recommendation 3.2.4.1) The setting needs to be chosen with particular care and extreme care is required when interpreting test scores, particularly with young children.’ (Pg 116)

We would be very happy to come and talk to you and/or your committee about the educational needs of students with autism spectrum conditions.

Yours sincerely

Hilary Stace

Board Member

Autism New Zealand Inc

This week I received the following letter back from Mr Peachey. 

‘10 February 2009

Dear Hilary

Thank you for your recent letter relating to the Education National Standards Amendment Act 2008.

 I have not yet had time to study your letter in detail but will do that in the next few days and bring to the attention of the Minister for Education concerns that I have in relation to how our autistic children are treated in schools.

I have raised with the Honourable Chris Carter Deputy Chairperson of the Education Select Committee the thought that the committee might do some work on the schooling for autistic children.

I can not guarantee that this will happen but it is something I am quite keen to do.

 Kind regards

Allan Peachey

Member of Parliament

Tamaki’

Che Tibby is justifiably angry in response, and there are some useful comments under his blog post, including one from Finn’s mother, Diane Standen, who notes (as she did to me in an email) that both the review and the Herald story omit any mention of Finn’s Asperger self-diagnosis:

Finn was quite open in identifying Aspergers as an issue with the CATT team. That was ignored then and since in the two CCHB reviews.

The only people with enough information to substantiate Finn’s. conclusions about Aspergers are his family and his partner. We are all confident that he made a realistic analysis.

The treatment Finn received would have been distressing for any individual in that situation. For a person with Aspergers their experience and reaction would have been far more acute.

When faced with removal from his home he was articulate about his extreme fears and refused to go into an unfamiliar environment. This had been an issue for Finn since childhood. It should have been respected. The advice from his family in the UK, phone and home support in his home for 48 hours until his sister Zoe could arrive to take over should have been considered. If felt insufficient, mental health support could have been available in the home for 48 hours. That path of action was not taken and Finn’s suicide was the consequence.

So there are two issues here: the awful incompetence shown on behalf of Capital Coast Health Board and others once a course of action had been set; and the fateful unwillingness to accept Asperger Syndrome as a complicating factor in that action. It is, sadly, not unknown for psychological services in New Zealand to fail to understand autism spectrum conditions: in this case, the results were disastrous.

Meanwhile, Diane’s website Aspergers Syndrome Stories is up and running in Britain, and has its first story, a tale of success out of misery whose depiction of school strikes a chord with our family experience. There’s a breakthrough moment:

Things started to go badly, kept getting ill then depression started to take grip. Couldn’t see a future, everything felt black. There just seemed to be pain everywhere and I was the cause of it.

Things came to a head when I went looking for food one night and found my mum crying fit to bust in the kitchen.

I’d never seen that before. I never realised how much I was hurting her. I didn’t know what to do about it, didn’t know how to help her or myself but something must have broken through a bit cause when two days later she started to talk to me about a job advertised in a local bike shop I didn’t close off.

I let her talk me into going along. I wouldn’t let her come in with me but she waited round the corner.

I wouldn’t say my interview was a great success, I mumbled, shuffled, probably looked at my feet a lot. John must have been desperate but he took me on trial. I owe him one and lots more.

I’m going to try and blog a lot more often here from now on, but for now, I’ll leave you with the concluding paragraph of David Cohen’s blog post for the Guardian website’s higher education section Around the world, parents of autistic children are fighting for their future. It’s this:

While parents of autistic children act as an educational infantry in this global educational struggle, we are usually the least equipped people in the world – in terms of time, resources and energy – to be waging any kind of battle at all.

Amen.

At the launch five speakers with lived experience of autism talked briefly about the significance of the Guideline. Three were people on the spectrum and two were parents. Among the speakers was Jen Birch who is an adult with autism who has been involved with the Guideline development for several years and is the author of Congratulations! It’s Aspergers Syndrome, and Matt Frost who is a young adult with autism who will convene the ASD Guideline Implementation Advisory Group.

The full Guideline and a Summary are available from the Ministry of Health http://www.moh.govt.nz/moh.nsf/indexmh/nz-asd-guideline-apr08

The next step is the hard job of implementing the Guideline so the services and supports it recommends are available to people on the spectrum and their families throughout New Zealand.

The New Zealand Guidelines Group (http://www.nzgg.org.nz) has the contract for the implementation of the Guideline and will work alongside the Ministries of Health and Education which have led the work so far. An Implementation Advisory Group of representative people from the sector is being set up to decide on priorities, identify gaps, develop various workstreams, and generally oversee the implementation of the Guideline. There will be ongoing opportunities for input from interested people.

…………………………………………..

The following is my speech from the Guideline launch: 

“I am one of the lucky parents in the autism community. I had a supportive family. No one took my child off me and placed him in an institution and told me to forget about him. No one told me that he couldn’t attend their school, no one asked me to pay for a teacher aide, and neither was he asked to leave school because they didn’t understand autism.  No one said his behaviour was too difficult for respite care. No one said he was too disabled for a job, for independent living, to be treated as a human being with feelings, hopes and dreams. No one said it was my fault.

 Many parents have fought and continue to fight for their autistic children to be supported to live ordinary lives like other New Zealanders. Often the mother copes alone – and her whole life involves managing the complex care requirements of her child – the erratic access to education, the turnover of care workers, keeping the family together and the negotiations required to keep all the balls in the air. 

In contrast my experience was of a friendly Plunket nurse who arranged for my son to attend a local 3 year check one day in 1988. In that same hall was a speech language therapist, an educational psychologist and early intervention specialists. Within two weeks there was a plan around my son where specialist teachers came regularly to playcentre and home, and he also had weekly speech therapy. All free, all part of an integrated system. At school he continued daily on-site speech therapy.

Note: this was before the big fragmentation of the 1990s.

I did not regard this as lucky – this integrated approach just seemed sensible and instinctively felt right. It is ironic, and a sad commentary on the world in which we live, that it has taken 20 years and best practice evidence from around the world, and over 300 recommendations, to attempt to build a collaborative system that just instinctively feels right. But this time it is going to be better, more effective and more equitable. This is a whole of life, whole of spectrum, whole of government approach.

But we will not get there without a supportive and skilled workforce. Autism is also the focus of my academic research and I have dug into the 10 year history of the guideline development. Again and again there are the names of the quiet champions of the public service who have kept on calling the meetings, getting the funding, seeking out research, keeping the enthusiasm going.

And thanks to the parents for all their blood sweat and tears for their struggles to ensure our children live and interact and are educated with their families and friends and peers. And to the wonderful children (like my son who has put up with talking about him all these years). And thanks also to Minister Ruth Dyson for her ongoing support.

Now we have to get on with the job.

Being diagnosed with Aspergers and many associated conditions, has helped explain why I always found courses, meetings and social events quite dramatic, and change almost impossible to deal with. I ended up being the one every one remembered for all the wrong reasons It is a known fact that Asperger people find change hard, and will stick to very stressful jobs, even when very stressed and not happy.

I had huge problems when it came to being interviewed, I just I fell apart. So it was such a relief when one of my ex. bosses after viewing my web site recently wrote:
“I felt really sad when I read the bit about your work experience and especially about interviews. I remember the interview you did that I sat in on and was really puzzled about how you came across – as you say you knew you could do the job, we knew you could do it but it wasn’t coming out at the interview. Now I have been reading what you have to say about AS I think I can begin to understand.”

I think one of the hardest parts for me, Is knowing I am very intelligent, I have a wonderful gift for being able to see the overall picture of things, and that’s why doing things like setting up a web site on my own is quite easy. It can be so hard not having a education and until recently I have not had the confidence to be myself. I have had to spend a life time of proving to others I am capable.

Meeting new people is one of the things I find extremely hard. I do not do small talk and of course what is it most people first say “what do you do”, “where was you educated”.. how do I begin to do that when parts of me and my life I never understood until now.– How do you tell others who you are, when inside feel like your lost in the ocean drafting. 

I now feel like at last I have been saved, but would not wish my journey on anyone, it’s been far too hard and painful at times. No one really seemed to understand, believe in or has been willing to let me simply be me. Growing up and not knowing is a bit like being wrongly imprisoned. You live / act for this world, but play / have fun in your own. 

But at times of course, your world spills over and intrudes into their world, that’s when your so called friends drift away…

Of course over the years I have learnt to change, adapt and gain confidence with age. Unfortunately since being diagnosed have also found quite often that what others do not understand, they prefer to keep at arm’s length.

We all need to learn to understand that in fact our symptoms whatever they are, are a part of who we are and lead a balanced life that allows for these differences. Of course it’s not that simply as we still are all so different and can have different associated conditions and circumstances. If you know one person on the autism spectrum disorder, you just know one! We are unique individuals and share traits which has been behind some of the greatest human achievements to date.


I was speaking to someone on line and they said something along the lines: 

I’ve found Cambridge University to be quite conducive to the generally unique learning style and style of interaction that many with Aspergers have. In particular has been tolerance for limited face to face exchange, and patience put forth into allowing time for those with Aspergers to generate their thoughts and finish expressing them….      

My reply: “Not everyone is able to go to Cambridge University, and not sure it would have suited me. What may suit one Aspie (person on the Autism spectrum) may not suit another, as we are all very different, the way I spoke when younger was very fast and muddled with a east end accent, and feel would never of fitted or felt at home in at Cambridge University… 

“My cousin when to Oxford University a genius really, but since leaving moved into his own home and stays there alone, does work but not as we all know it and would be very hard for him now to integrate like the rest of us.”I do understand what you are saying, but we all do have to learn to live in the real world.”
But after saying that, it got me thinking – what is the real world to one, is not for someone else and why cannot people exclude themselves if makes them happy. Do we have to act in the real world and be happy in our own or will society ever accept us for who we are!?

I still do not know all the answers myself, that’s why I am trying to open discussion to get people thinking about our differences .As unfortunately people still think Aspergers is an illness, in fact someone said to me recently” I know what it is, it’s a mental illness” my reply to this was I am really not mentally ill, just different.

The easiest way I can explain this: People on the autism spectrum think one way and people not on the autism spectrum think another way and we both continue to cross wires. People would never know if I did not tell them I had Aspergers, it does not mean I do not suffer and often feel at odds with the world.

Just spend one day doing some think that you find really hard and glad when over, well that’s what it can be like for a lot of people on the spectrum a lot of the time. Just to chat to people and to smile and be friendly can at times be a task for some of us.
I feel I have come a long way, but know other people on the spectrum still are so wrongly judged. We really are just unique individuals which the so-called ‘normal’ world often underestimate, and often do not try to understand. We have been made to believe in a stereotype of ‘normality’ for our children, and to panic, fear and react when our offspring don’t achieve. I was speaking to a little boy at school some time ago and when I ask him why he was misbehaving so much, he simply said “I’m bored” these children often are very needy and find it hard to focus on things that do not interest them, is it really the child’s thought he is bored, or is he just not being heard!I have had dark moments, which have lead to depression and my obsessive tendencies have taken hold, I have felt like withdrawing from society. But with new understanding comes hope and I no longer am crushed at every turn and truly love being able to be the real me. In the past at times it has felt like my very being has been smashed open with a sledge hammer, but now I am no longer lost and chaos no longer shadows me. I have found my true self.

Do not crush your child, embrace them and their differences, allow them to believe in and be themselves. We really are real people and can lead successful life’s, you may not always agree with our differences, but at least try and understand.

There still are so many variables and differences and far too many labels, for even those on the autism spectrum it can seem like one incomplete puzzle at times.

Being on the spectrum, and having Autism, Autistic Spectrum Disorder, Aspergers, High functioning, Low functioning and disorders that run parallel with the spectrum disorders and are treated the same but not on the spectrum like non verbal learning disorder – confused, to me they are all part and parcel of the same spectrum and I feel there should be one name.

Autism is like a web which is in the center and around it just some of the associated conditions people can have PDD, OCD, Social phobia, Anxiety, Bipolar, ADHD, ADD, Dyslexia, Dyscalculia, Dyspraxia, Tourettes Syndrome, speech disorders… It seems to depend on who you see, is what you get diagnosed with. There really needs to be a one stop place, for advice on not just autism spectrum disorders, but all the associated conditions as well. Trying to be diagnosed can be near impossible especially for adults; the whole system at present is far too disjointed.

I saw a program on Dyslexia and it hit me like a ton of bricks, how could I have and not of know until in my 40s. After I got diagnosed for Dyslexia, also found out had Dyspraxia. But still knew there was some think else, so continued to search and write down all my differences, armed with all this information approach my doctor and I was lucky he thought I may have Aspergers. Was told just like that, after all these years and referred onto a Clinical Psychologist.

I have been diagnosed with Aspergers, Dyslexia and Dyspraxia (which have found out is the cause for my driving problems), Bipolar traits, but that’s ok under control now! and have sight problems. Undiagnosed but very sure have ADHD or ADD, always been extremely hyper, and as a child had Clutters, a speech disorder.I did ask Tony Attwood on his views regarding Mood swings (Bipolar) link to aspergers, and his response was:

Thank you for your message and very intriguing question. I think that people with Asperger’s syndrome have many issues in relation to emotion regulation and perception which comes from my clinical experience. However, new research on the amygdala (a part of the brain that is involved with emotion regulation and perception) has indicated that those with Asperger’s syndrome can have difficulty managing their emotions. I am not sure if the characteristic is one of bipolar or manic. I prefer to describe it as an intense emotional response that is difficult for the person with Asperger’s syndrome and others to control. A person with Asperger’s syndrome may very quickly move into an intense emotion with a relatively minor trigger.I recommend Cognitive Behaviour Therapy (CBT) for people with Asperger’s syndrome to help them use their intellect to manage their emotions. I have a whole chapter on this in my new book The Complete Guide to Asperger’s Syndrome, published by Jessica Kingsley Publishers, with more info. at www.jkp.com. Tony Attwood.        

As a parent I have often been made to feel bad for my children’s differences, let alone my own. To me it does not matter if my boys are on the spectrum or not, the most important thing is that they understand who they are. I will never make them conform, but do want them to be confidence and believe in themselves Maybe this is because I recognized bits of me in them, and do not want them to suffer my childhood chaos.
As a parent you know your children best, so try not to allow others to tell you they know better than you, as more than often they do not. Celebrate your child’s quirks, eccentricities. As just like our children we do not always need to conform, believe in them and yourself. What is really needed is for society to accept that there is in fact a whole group of people who are just different and it’s ok.

In other cultures, some of us allow for differences and except individuals for the way they are, why can’t the rest of you. All I ask people to do is take a step back from time to time, and enjoy your child’s individuality. But, as long as we continue to prejudge others, and not recognize peoples invisible disorders, you may be hurting someone more than you could ever imagine.
I continue to hear “but I did do disability training” but that only gives you a very basic idea and as yet does not usually cover invisible disorders, such as autism. And others have done courses on ASD, but a course only does help you understand. You cannot become an expert overnight, and please remember we are all unique individuals, so treat us as such.

I have lived with and around ASD all my life, I have intently studied since realizing I could have, this was before I was diagnosed and I am still learning. No one knows all the answers yet, that’s why it’s so important we all come together and learn from each other. Far too many people are being left in the dark, needing help and not knowing which way to turn. Unfortunately it’s still a bit like breaking open a piñata and depending on which direct you go, is what you get diagnosed with and what help you receive!

Do adults need to be diagnosed – my answer would be a big yes, if it was not so hard and cost so much, and if a doctor does not tell you “adult do not get diagnosed” false of course. Unfortunately at present it can seem like trying to fit together a puzzle with all the wrong bits. But I cannot express how much of a difference it has made to me, set me free of all the anger, frustrations and confusion.
My boys keep things in perspective for me, otherwise at times it can feel like I’m in the middle of a very big ocean and no one can hear me, battling against impossible odds.. But as the Aspie community grows stronger there seems to be a brighter future for our children and that makes it more than worthwhile. Now at least I understand enough to be the real me and talking about my past is no longer a dark shadow. So for now I guess I am happy being uniquely artist autistic and will continue to convince others that it really is ok…


Autism spectrum disorder it’s not a dirty word that we should only mention behind closed doors, we all need to embrace, talk about and learn from each other if not for this generation, but the next.
The government has already agreed to go ahead with screening children at a younger age, which I feel is brilliant and truly needed. But my concerns are if people already with disadvantaged learning disorders do not have nowhere near enough support , backing or even understanding now. How will the government deal with a growing number of early diagnoses? If I was in a wheelchair would you still discriminate against me the way you do now!?
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ASPERGERS PARALLEL PLANET:http://www.asplanet.info/ 

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