17. The negative connotations of Autism

My beautiful niece is now ensconced at boarding school, thanks to a few amazing people who believed in her and fought for her to get there.  Prior to making an application to the school, I went to see the Deputy Head.  Her response was a negative one.  Maybe her view was stereotypical e.g. melt-downs, socially isolated, obsessed with a singular interest, who knows.  She informed me that the school had some children with autism, but did not seem keen on me making an application for my niece.  I partly put this down to the fact that  her brother who was leaving the school that year, was not the over-confident pupil he was expected to be.  Even though he achieved the results needed he had to be cajoled and did not take part in the rest of school life much, except for music. For parents or other relatives like myself, the same old situation continues to rear it’s ugly head – that the younger siblings are tainted with the same brush as the ones who have gone before.  My niece and nephew are nothing like each other either in personality or academically.  My niece is a stickler for detail and has a mathematical and scientific brain.  She is a lot more confident and outgoing than her quieter brother, for whom still waters run deep.

Earlier this year, after offering my niece a place, the school contacted me very late into the academic year to inform me that they had changed their minds and would no longer retain a place for her.  Their reason – they felt that she would struggle to fit in with the forthcoming year of robust girls.  All this after they had observed my niece in her junior school, spoken to her teachers and she had passed the entrance exam.  The Head of my niece’s school was already aware of the situation, when I contacted her the following day.  On hearing that I had refused to accept their reasons for discriminating against my niece, she got on with making a case for the new school to have a re-think.  I contacted a few organisations that dealt with children who had special needs or additional learning requirements, none of which applied to my niece. They could do nothing unless it was a state school. It was at this point it became clear that central and local government regulations are for state schools, thereby preventing such behaviour.  Private schools function as independent charities, therefore are answerable to no one except their trustees and are at liberty to do what they like.  It turned out that the Head of my niece’s school had a network of contacts, including knowing a trustee at the new school. The case was made for inclusivity and by June we were assured that she would be attending the new school come September.  Throughout this time I kept this news secret from my niece and sister.  What was the point of adding to my sister’s anxiety and lowering my niece’s self-esteem?

‘Why would you still want to send your niece to such a school?’ I hear you say.  Well, it would be very clear to those involved at the new school, that they would be under the spotlight.  Furthermore the Head of my niece’s junior school might be wary of recommending this school to others.  In order to shore up my argument as to why she should retain her place, I utilised the assistance of the hands-off extended family, who lived close to the school, so that they would accommodate her short-term should she  have a meltdown or struggle to cope on the odd occasion.

One week into the new school term, the matron informed me that my niece fitted in well and was one of the girls.  It became clear that my niece embraced her new life as she was  no longer living in isolation outside of school and was kept busy throughout the day.  A child/adult with high functioning autism is rarely late for a lesson and is a stickler for the rules, sometimes taking them a bit too literally.  The ridiculous thing is that the fears the new school had about my niece fitting in and possible negative behaviours, could relate to any neuro-typical child at any school.  The label ‘Autism’ can bring to the fore negative connotations for those with little knowledge and/or experience of what it means for each individual and their families, living with the condition.

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16. The Services (or lack of)

While my sister pays for a private company to clean for her, my elderly mother relies on contractors assigned by the council. Both offer an equally varied service. Last week the cleaner my sister had only cleaned half of the rooms. My mother has a different cleaner every week, most of whom don’t clean according to my mother’s wishes leaving my normally calm mother irate. Some of the cleaners visit and log more time than they actually do. Others arrive unable to read or speak English therefore cannot understand what they are being asked to do. Her recent but now regular cleaner thinks cleaning the toilet means putting toilet cleaner in the bowl and relying on the toilet water to do the rest, even though an unused toilet brush is adjacent to the toilet bowl. Eventually this comedy of errors resulted in me contacting the Commissioners.

Today we had a visit from the borough’s Complaints team and the manager from the care company. The woman from the Complaints team arrived on time. The other one got lost. When she called 30 minutes later still unable to locate the house, I went outside to meet her only to find her with hair blowing staring off into the distance, as though hailing from a scene of ‘Gone with the Wind!’

I started to get the measure of this woman when on sitting down underneath a dimmable upright lamp she muttered to the other woman, ‘I can’t see. I need light’. So I as if like Cecil B De Mille, produced more light by turning up the dimmable lights and proceeded to address the poor service received from her staff.  Her immediate response was ‘We can’t do that!’  After hearing this one too many times, I gave her the list of chores I had typed up for the different cleaners attending each week and asked her to tick what they could do.  The situation is that the cleaners are discouraged from touching ornaments to clean them or the surfaces around them, in case they break them which is why my mother’s ornaments are full of dust after a cleaner visits. They are not allowed to use splashable cleaning fluids in case they get burnt, etc.  One of my reasons for complaining was that my normally calm mother, whose blood pressure would rise at the slightest thing was finding the whole experience unbearable and was not worth her having a stroke for!.

One thing that came out of the meeting was the number of things that had not been put in place e.g. a device should have been installed in my mother’s home allowing the cleaners to log in and out while also making a written note of their times. The device had been removed, hence the reason why it was our word against the company’s when their staff logged more time than they did.

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17. Capability for Work questionnaire

I have been unable to write for a few months now, due to the emotional strain of having to fight through a number of events that have hit my family.  Writing a blog has been the last thing on my mind. I have often needed more than 24 hours to complete what I am required to do in a day.

After a number of life changes for those I look after, including myself, things have settled down.   I am now able to focus much more on my sister, who has MS.  My energy levels have been stretched and this is coming from someone who struggles with their energy.  Today I helped her complete a Capability to Work questionnaire (https://www.gov.uk/government/publications/capability-for-work-questionnaire).      A government requirement for disabled people to determine if they can work. What a horrible form!  No one who is seriously ill could possibly complete this form without assistance, due to the detail requested. Of course due to her fatigue, cognitive impairment, pain and other symptoms for which words are not enough, we spent over nearly three hours completing it.

Later I did some research online and found the organisation Turn2Us gave much more of an insight about what is expected.  I recommend looking at their website.  https://www.turn2us.org.uk/Benefit-guides/Work-Capability-Assessment/The-questionnaire-(ESA50).  One of the tips that came out of the information Turn2 Us gave is to ensure you describe what a ‘bad day’ is like.  I have read too many horror stories of disabled people having their benefits stopped and being told to find a job.  For me it is about ensuring the decision makers get a clear and true picture of what life is like for my sister. I don’t need any tick-boxing bureaucrat to tell her that she is capable of working, when she is presently struggling to stay alive!

Posted in Autism Spectrum Disorder

16. Theory of Mind

We took the son of a family friend I grew up with, who now lives abroad, out today.  Being Easter Monday it was great to drive through parts of London that are normally out of bounds.  However, most events require an entry fee and with four of us travelling around, that added up to a lot of money.  Our guest was already aware of the costs of things in London and had informed me that he aimed for places that allowed free access.  We tried to peer through the bodies of people queuing between the columns and the ticket desks of St. Paul’s Cathedral. I also tried contacting the verger of the cathedral to no avail.  Apparently, as a church attendee it is possible to get a pass to gain entry to the cathedral, but the verger also has to validate the entry.  From there we took our guest on a sightseeing tour of London’s modern high rise architecture, which proved to be of interest to him.  Finally, we ended up at the Science Museum.  The Natural History Museum had a slow moving, excessively long queue. I was told by staff that this was because it was a bank holiday.  Disappointingly the Science Museum had very little that was interactive. The Launch Pad on the top floor used to provide free access to a great interactive area of scientific learning for youngsters under 10.  That has been replaced by the ticketed Wonderlab.  Beyond that the museum is made up of exhibits showing the benefits science has had on mankind historically.

We ended up on the top floor where the three possibly fun-filled events were ticketed.  One area looked like a scene from a science fiction movie.  Males and females, most in dark clothing sat motionless with virtual reality (VR) headsets on, watching astronaut Tim Peake’s descent from space.  The privilege of seeing that was £7.  The other events on offer was a flight simulator and a 360 degree flight pod for £12.  My niece was ready to have a pod experience.  However, her brother and the young male guest were less keen.  What struck me was my niece’s reaction when I informed her that neither of them were interested in the 360 degree flight pod experience.  ‘Really!’ she exclaimed, shocked that that they did not want to do what she wanted to do. I watched interestingly as her brain computed this fact and hoped that this was another life lesson learnt.  One of many she is working through. I also suggested to her that maybe she needed to ask them if they wanted to join her before taking it for granted that they would.

Posted in Autism Spectrum Disorder

15. A beautiful experience

My niece became a teen this year. Last night she asked me to take her shopping as she needed a green t-shirt for her school’s forthcoming cross country event.  As bright green is not fashionable this year we eventually found the t-shirt at a sports shop.  Her ‘special interest’ is football, so I was subjected to a commentary on all of the photos of footballers in the shop, which teams they played for and whether or not she thought them to be any good. European teams in the Barclays Premier League interest her the most. Her knowledge is better than her playing. Having joined the local girl’s football team, she quickly lost interest as she wanted to be fast-tracked to the team chosen to play nationally. Unfortunately, in her mind if she is not good at something immediately she loses interest. However, she can rattle off details about Neymar’s football history.

While looking for the t-shirt my niece expressed an interest in some of the clothes in the fashion shops. As her clothes are bought online, one or two shops are familiar to her. It was beautiful to watch her realise the shops had some similar items e.g. leather jackets with colourful patchwork, camouflage jackets and shirts, etc. I introduced her to a shop she had never visited before and she loved the clothes. In fact they were really great for her age group. Wanting to exploit the beautiful moment of her discovering fashion by herself, while pointing out that she needed to enjoy her shape I decided to let her choose a few items.  It was endearing to watch her look for the clothes she liked which were hanging on the rails, as she had no idea that she needed to look behind those displayed to find what she needed. It was like watching a beautiful flower open slowly as she tried clothes on, choosing what suited her and what felt good.

I dropped her off at home feeling really privileged to have been part of her journey helping to explore a new developing interest in fashion and what suits her body shape. It is such a shame that her mother’s ill-health meant she was unable to be a part of that experience.

Posted in Autism Spectrum Disorder

14. Encounters at the School Gate

This is such a strange time of year for Year 6 primary school parents. January in the UK is roughly the time when the independent schools inform parents if their little darlings have been granted a school place and March is when the state secondary schools do the same.

As children, my sister and I attended a small quaint Church of England School in a village-like enclave of North-West London, now a hotspot for celebs and unaffordable to the average Joe. In those days you only knew about the school if you lived there. Neither my sister, I, nor the majority of the children who attended then would stand much chance of getting into that school now. Like the CofE school my niece and nephew attended, that school would now be dominated by the ‘State ’til 8′ kids whose parents would have chosen to benefit from the ‘Outstanding’ Ofsted ratings granted whilst putting their money aside for prep school at 8 or opting for their children to stay on until 11 for independent school. Some of my niece’s and nephew’s classmates disappeared off to prep school at the end of year 4, aged 8/9.  The school prided itself on being diverse, but that was only the case culturally not racially.  It seems in order to avoid any ‘white only school’ labels, one or two dark-skinned children would appear at the beginning of year 5. At some point within the first term rumour would have it that these children had been subjected to racist abuse by a small group of their peers, not all caucasian in appearance I hasten to add.  In fact there was one case of a very fair-skinned mixed race child with a black mother being prevented from joining in at playtime by a darker skinned child of Russian/Persian parentage. Interestingly this child’s younger sibling looked as though she had been out in the sun for far too long! One suspects the mixed-race child’s black mother was discussed negatively at the home of her abuser.

My niece’s time there was not helped by the fact that the school had attracted one or more prominent VIP’s. Parents were falling over themselves to get their little darlings into this hidden gem of a primary state school. Even the priest seemed to lose all self-respect and humility, pushing parents out of the way during ‘the Peace’ to shake the hands of these people with their security team in tow. During my nephew’s time which was prior to the VIP era, the children who won prizes for competitions were the ones whose parents donated money to the school, headed up the parent’s association or ensured they were on hand to run the school fairs or food and face-painting stalls.  No exception seemed to be made for the talented children of parents who were struggling to make ends meet and who did not have the time to help out.

The majority of those who would normally apply to the borough’s state schools now felt under pressure to drag their poor little darlings to every exam going at independent schools offering scholarships and bursaries, even if their children were below the academic prowess required. Those who triumphed had spent vast sums on tutors since their little darling could talk.  The others who triumphed just paid the fees fully assured in the knowledge that their over-tutored dunces would be able to network with the right people. The remainder were left to fight for a place at the state CofE secondary schools and that stirred up another type of animosity.

Parents I had spoken to amicably since reception no longer spoke to me.  I did not know if they were upset that my niece was not going to the same school as their child or that she was!  The mother of my niece’s ‘best friend’ scowled at my niece as she passed us.  When I initiated a conversation with her I discovered that the school her daughter would join my niece at was not her first choice.  She wanted the ‘ladies finishing school’ as my priest described it. The parents whose children had been granted a place at an independent school now enquired where my niece was going. When unable to draw out the answer from my lips, they pummelled my niece for the answer. Never mind the fact that these people had rarely spoken to me at all since reception. One father whose daughter was to attend a state secondary school demanded to know how my niece had gained a place at a better school.  When I questioned his hostility he let it be known that he had allowed my niece to join his daughter at play in the swimming pool.  Wow! So we were a charity case now.  A large group of parents at this school were unmarried couples.  However, my sister being a disabled but divorced parent was obviously a lesser being and someone for the other parents to look down upon.

Now put an undiagnosed child on the autism spectrum into the mix. By the age of 10 the girls were becoming aware of their bodies, boys and the price of each other’s houses. In Year 5 the female teacher had a ridiculous policy of allowing the child at the top of the line to hold her hand while walking from the playground into the classroom each morning. For a child diagnosed as being on the autistic spectrum, there can be no compromise let alone for an undiagnosed one. Well of course the girls fought over this and the same girl who racially abused a child in reception was now choosing to battle it out with my uncompromising niece. Even though state schools have a SENCO – a special educational needs coordinator, the funding is only there for them to work with statemented children. My issue with schools is that while teachers acknowledge that they need to act as social workers and psychologists in the best interests of the child, few are equipped to do so. It is more likely that they will miss the well-behaved but slightly odd child on the autistic spectrum because no two children are the same. Experience, expertise and a trained eye are required.

Posted in Autism Spectrum Disorder

13. Christmas & autism

I love Christmas. The Christmas tree lights give the home a different dimension. In my family it is a time to indulge in the rich traditional foods my sister and I grew up with, much of which we would not normally consume again until Easter. By then the adults would have worked off some of the weight we had put on at Christmas. It is also a time for us all to be together, to relax and enjoy the surprise on each others faces at the gifts we each receive.  This year however, I had already consumed four Christmas lunches/dinners in one week. By the time Christmas day came I felt and looked like a stuffed turkey!  As a self-employed person I found myself with no invitations to Christmas lunches. Now as an employee, like the buses they all came at once.

On the day my niece greeted her grandmother & I with the usual ‘Hello Ugly’.  I have come to acknowledge that what comes across as rudeness is her pre-teen way of showing affection. However, due to her grandmother’s reduced hearing my niece soon found the volume of the tv too loud and retreated to one of the bedrooms.  Interestingly had the music she liked been playing, the volume would have been blaring. Emotionally she was all over the place. One minute teary-eyed, another play fighting with her older, physically stronger brother and coming off badly. I eventually got her to take some drops of a herb to balance her hormones and she became quite contented.  Along with ASD, her hormones are all over the place and generally contributes to a grumpy persona. By the end of the day she asked to play hide and seek, a recurring scenario that she has requested since she was three. What usually happens is that she will hide where I have just previously hidden. When she was three we could excuse this as cuteness.  Now as a pre-teen, first of all the request seems babyish. Secondly from her perspective it could be some kind of security blanket.

 

Posted in Autism Spectrum Disorder