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  That has been replaced by the ticketed Wonderlab.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

12. The battle to communicate properly and be heard by the’Professionals’

My niece had a visit from a ‘professional’ yesterday, one of two teams involved in her care. To date time has been spent talking to the adults in her life, rather than putting things into place for her.  I am normally present at such meetings, however doing temporary work has meant longer hours this week in order to make up for lost pay next week especially as the working week will be absorbed by two bank holidays. The ‘professional’ had received misinformation from the person who sent her, leaving my niece with pent up frustration. She has not yet been taught how to manage frustration or to act positively in light of that frustration and in this case, correct the ‘professional’.

The result was that heat was sent in my direction in the form of a text which began ‘Why did you tell…….?’ Although my sister was present throughout, my niece decided that the incorrect questions she was asked originated from me, the dominant force. The ‘professional’ had tried to investigate why she did not enjoy playing sport, when in fact she did not enjoy swimming. The dislike recently came to the fore when she tried to pummel her ill mother into keeping her off school because of a swimming gala. This is where my role as a Carer as well as Aunt comes into play.  Leaving home earlier than planned I had to talk my niece into attending school. The deal was that I would speak to the Sports teacher about her sensory overload.  In fact there was no need for a big build-up to an explanation as he was fine with it.

When I later chatted to my niece, her reason for disliking swimming was not sensory, nor was it the thought of wearing a swimsuit in front of the whole school and parents, she just disliked swimming. I am aware that she has difficulty identifying her feelings. Not being the strongest swimmer might have meant that she could not take being beaten or she suffers from sensory overload – a trait on the list of spectrum disorders.  Who knows! I hope the key to deciphering negative experiences for my niece is creating opportunities where she can explore what is going on for her,  even if she uses her cognitive skills to do so.

Posted in Aspergers, Aspies, Autism, Autism Spectrum Disorder, Carers, high functioning autism, Sensory issues | Tagged ,

11. Can you spell ‘Investigation?’

While food shopping recently, I came across a two year old girl who was about to turn three, talking to her mother.  She caught my attention because just like my niece when she was that age, this little girl was using words bigger than she was.  In my niece’s case she would challenge adults to spell them.

I am presently working my way through Tony Attwood’s book ‘The Complete Guide to Asperger’s syndrome’.  To date I have read small booklets on autism with tiny references to high functioning autism or Asperger’s. However, I felt compelled to purchase one of his books in the hope that it might give me a greater insight into my niece’s condition. Interestingly I even saw myself on some of the pages. As Attwood points out, one of the traits of Asperger’s in a child under five is the use of elaborate words. For any parent/carer in charge of such a child, the obvious belief is that they have produced a bright child or a genius.  They might have, but how are they to know that such behaviour might not just be out of the ordinary, but high functioning autism?

Posted in Aspergers, Aspies, Autism Spectrum Disorder, Carers, high functioning autism | Tagged , , ,

10. Protecting your child from predators

How do you protect your child, boy or girl, from predators?  At the time of writing this, British footballers have started to reveal the sexual abuse they suffered from the age of 11 at the hands of their football coaches. These I gather are neurotypicals (those not on the ASD spectrum) who have been exposed to abuse. It made me think, what are the risks for those on the autistic spectrum?

It is often a worry having a pre-teen girl on the autistic spectrum, who is far from girly and feels more comfortable hanging around boys.  Do people on the autistic spectrum lack boundaries?  Well they are no different to the rest of us.  Some of us have strong boundaries and react badly to our personal space being invaded, others do not or if aware, freeze not knowing how to react.  While my gorgeous niece is not keen on being hugged unless she initiates it, she also does not know how to give someone space if she likes them and wants to be around them continuously. As a younger child this seemed very typical of her years, as young children rarely want to stop when they like something or someone. However, a couple of weeks ago while out shopping paying for items at the till, I turned around to see a man in his forties standing less than a hair’s breadth behind her.  The obsession on that day to wear a hoody made her look like a pre-teen boy from behind. Nevertheless, whether boy or girl this predator physically charged towards me when I accosted him, accusing him of being a pervert.  All the while my niece seemed none the wiser of this predator’s unacceptable invasion into her personal space.

Interestingly, my niece’s reaction to me alerting security was to raise her eyes to the ceiling as though I was making a fuss about nothing. This led me to realise that I did not want to add to her discomfort or embarrassment during such a time. When the security guard asked if the pervert had touched my niece, I did not feel able to verbally reveal her neural status to him and cause her more embarrassment.  Besides she was not aware that he was standing so close to her.

Once home I looked on the website of the National Autistic Society and ordered some Autism Alert Cards, which are designed for the person with the condition to show others when in difficulty.  As my niece is in denial about having Asperger’s, I ordered some for the more responsible adults in our family to carry when with her. This can be shown to others to explain her situation, while in her presence, thereby limiting any anxiety caused to her.

Having raised this recent experience with the professionals involved in her care, they acknowledge work needs to be done with her on what constitutes inappropriate behaviour.  I am presently exploring ways to talk to her about the same, so that she understands the  concept of what personal space means and when it is being invaded.

Posted in Aspergers, Aspies, Autism Spectrum Disorder, Carers