Month: May 2020

There is hope, not all is lost, yes, after many episodes of misery that we subjected our loved ones to and to ourselves, things can be mended… the only way is up.

I know this is true as I just subjected my family to one more dreadful episode of unreasonable behaviour due to my anxiety – fortunately all is fine now.

In this blog I will dissect what happened, what aggravated the situation and what helped me to reach the calm place where I am now. I’m hoping that this can be of encouragement to somebody.

To start, I had a challenging morning. A very important family decision had been taken without any of my input and I was told about it in a blunt manner. I became anxious.

My husband told me that he was considering taking some medication for a suspected illness (not confirmed by tests) despite some well-known negative side effects.

When I forcefully voiced my concerns, he told me that it was his decision and there was nothing I could do or say to change his mind… more anxiety. Despite this, I went to the pharmacy with my husband to collect his medicine. My mind was overwhelmed with the knowledge of the pernicious side effects of this medication and I was full of tension and anxiety.

At the moment of payment, a serious looking shop assistant apparently joked with me (I still do not see it as a joke) and I was offended. As a result, I responded with an angry stare.

I was scolded by my husband who told me off for being so rude. It hurt that despite his knowledge of AS he did not understand at that point that I had not perceived the shop attendant’s words as a joke but as an insult. More anxiety.

Next, I visited a supermarket, where people were not respecting social distance, they did not wear gloves or masks. Fear and mental tiredness crept in and a feeling of fog filled my brain.

Going home I took ages disinfecting the food bought in the supermarket with antibacterial wipes. A conflict due to domestic chores arose and to top this my dear daughter told me nicely that she wanted to leave home as she needed her independence.

I exploded and became totally unreasonable. Naturally she stated that my anxiety was another reason for her to leave. On top of anxiety, a sense of failure for not reacting wisely engulfed me.

I became sad, restless and tried to distract myself with my special interest of the moment, watching videos of royalty, but this did not soothe me. I was a bag full of anxiety.

My husband came kindly to ask me how I was and I attacked him with verbal fireworks and all kinds of expletives. I became unreasonable and extremely hurtful and angry.

An ugly episode ensued and I can see how he became flabbergasted. He was impotent to help me as the intensity of my anxiety was extreme.

I was sinking into desperation, my anguish and sense of failure as a mother, as a wife, as a home maker, were only equal to my guilt in being unable to be the solid and calm human being that I desperately wanted to be.

I felt sorry, especially for my children, as I always want to provide them with safety and certainty and to be a good role model. I want to be the one that protects them and gives them sound advice and

not the other way round. But in moments like those that I described I become so inflexible and it’s like I reverse in age and maturity.

The feeling of failure and anguish is powerful and this is enhanced by the conviction at each crisis moment that everything is lost, there is no way back, nothing is going to be the same again, this is the end of the road.

To neurotypicals this can be seen as an overreaction, but for AS people this gear-up in intensity is automatic.

What helps me to recover?

Prayer.

The first thing was prayer. As the crisis deepened, I left my husband and daughter, went to a quiet place and knelt down and asked for Jesus’ help. I could feel a dark fog leaving my head and I could sense that everything would be all right. I did not know how, but I just felt it.

After praying I went back to my husband and daughter and was received in a calm manner. they avoided asking the question, “Are you all right?”. That was not necessary.

Knowledge.

My daughter who is very insightful and knows about AS acted in a way that was so beneficial and helpful. She just let me be. She was calm and validated my feelings of anguish as she said that I have some fears that are real to me even if they are not real to everyone else.

This alone was a cold flannel on a feverish brow. My daughter also realised that since the morning I had had some negative stimulation and pointed that out to my husband.

Knowing about AS is indispensable for us and our family’s sanity, only when we know this can we start to understand ourselves and others.

Self-awareness is important. Just to know our physical signs of anxiety, like shortness of breath, and psychological ones like becoming increasingly rigid and inflexible in one’s thoughts. If we recognise these signs we can stop and go to a quiet and safe place and unwind.

Time.

In my personal experience, when I am in the midst of anxiety that is producing anguish, I try to remember that this has happened before and that it will end.

It is fundamental that I inscribe in my mind the mantra ‘THIS WILL PASS’, and to go to a place like my garden or my room where I feel safe.

What went wrong.

Thinking in retrospect, everything was too much. Too much stimulation, too many people, avoidable conflict. As my mental and emotional energy are not infinite (AS people spend them faster than neurotypicals) I need to spend them wisely.

Going to the pharmacy and supermarket was a mistake. But once there I should not have allowed myself to be so overwhelmed with all that was around me, probably I could have avoided what was not indispensable.

To have a quiet moment for myself in solitude during the day, probably in my garden, could have keep me inside my limits.

I should have been included in the important decision, and importantly, it should have been talked about in a more AS friendly way, avoiding the surprise factor.

Reflecting on what I have shared, I want to say to my fellow Aspies that if anxiety-motivated incidents happen in the future. We must act as surfers. We must ride the wave with courage and get to the safe shores of serenity and peace, holding on to the conviction that we are wonderfully made and unique.

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The premise that an AS student in mainstream education has the right to an equal education is a generally accepted belief. Unfortunately, what I have observed while working with AS children and young people in both special and mainstream schools in the UK for around 19 years, is that this is not the case. This has given me the conviction that AS students are short changed.

I realize that some parents do not want their child attending a special school for many reasons, one of the most common is to avoid labelling the child as ‘special needs’. Even if they believe that an AS school is the right provision for their child, the number of specialised AS schools is extremely low which leaves many parents and carers of AS students unable to access one.

The public’s general assumption is that sending AS students into mainstream education is a great stride in their fight for equality. In this blog I will concentrate on what I have observed in mainstream schools and how the vast majority of mainstream schools that I worked in did not offer AS students an effective provision for their unique needs.

Too many times my work as an LSA was limited to what was essentially babysitting. What were clearly able students were not provided with differentiated work and were given filler activities far below their capacities. On the other end of the spectrum, I also worked with students who were unable to reach the basics of the curriculum.

As a consequence, I saw how boredom and frustration transformed into challenging behaviour, ending in sanctions and many times exclusions. These students were stunted, lagging behind the class even if they were endowed with intellectual gifts. On top of this they were losing a precious window of opportunity for specialist education at an age where the chances of success of achieving their milestones were at their highest.

I have lost count of the number of times that I was ordered to cajole students back into a classroom after they had run out to hide in order to avoid what was clearly not the right place for them. A few common triggers that caused real suffering included classroom noise, disruption from other students with different special educational and behavioural needs, sudden changes of routine, and sensory overload.

It is true that in some schools there were accommodations that are helpful, like allowing the student to have a desk in a corner of the classroom (mainly in primary school) or providing the student with a five-minute card so they can leave the classroom to unwind when needed. Nonetheless these positive interventions pale in comparison with the high amount of unmet needs and lack of appropriate interventions for special educational needs and disability (SEND) students. It is also true also that some schools allowed for the students that could not cope in class to work in a private room or in a SEND POD, however this was not always allowed by teachers and randomly implemented. I found also with some students that they can get used to the safety and calmness of the POD room and it was a struggle to take them back to the classroom.

Autistic units attached to the mainstream school worked well up to a point in that the students were not overly exposed to the big school. However once again, the lack of investment in proper staff training was evident, which along with low academic expectations converted this into more of a day-care centre.

The main effort of many schools that I have worked in has been to keep AS students inside the classroom. During my performance reviews this was a key indicator of my effective performance. The student’s academic performance was secondary. In fact, with few exceptions, AS students are not given high expectations of achieving well academically, and many leave the secondary provision with low or no qualifications.

It is hard for AS students to be part of a mainstream school; I have seen the tears and panic when an AS student is ordered back to an environment that was clearly not suited for them.

Take the example of a young girl who I needed to spend 10 to 15 minutes with outside the classroom door, convincing her that she was going to be okay inside the place that she feared most. I vividly remember her moving one step at the time towards the door, opening the door and suddenly going back and sitting on the floor in the corridor crying. It helped if one special friend was there, however this did not always work, and more often than not, we were unable to finish the lesson as so much time was lost.

Anxiety in AS students was a common denominator in all the schools I worked in and I believe that the fact that this is not seriously and vigorously addressed is neglectful.

One consequence of this neglectful state of affairs is exclusion, for example, when the AS student lashes out at other students, members of staff or school property. There were too many lost opportunities to help the students, and a lack of in-house therapies, absence of mentors and negligible external agency interventions.

AS students are prone to meltdowns when their coping strategies (if there are any) fail, so this can make the student a pariah and a target of bullies. I have witnessed mental and physical bullying however the most pernicious kind has been when bullies use low level intensity that is so difficult to detect except by their victims. This is when the bully identifies what triggers AS students and their anger or anxiety responses. They wait for an explosion and then they retreat and no one notices except the bullied student, who when sanctioned, complains to a member of staff and is often not believed as there is no evidence, or they are deemed too ‘sensitive’.

If bullies are identified, sanctions are too weak and sometimes not followed through. The schools antibullying policies, from what I have observed are not a strong enough deterrent.

The fact that most AS students do not present an obvious disability, plays against them so they are less understood and labelled rude, disruptive, or weird when they try to fit into an alien environment that has its unique codes of communication and expectations. I have heard a SENCO blame a bullied AS student saying that he brought problems on himself for being ‘strange’.

We have market driven schools that affect the most vulnerable in society, amongst them AS students. This system is producing a demoralised demotivated and exhausted generation of dispensable professionals of education where short-term contracts are common practice and schools have a low retention rate. This workforce is stretched thin and lacks necessary tools and support, to the point that they are often forced to overlook best practice.

In spite of this I have seen great teachers and support staff who clearly cared for their AS students. Their positive practice had to do with their personal qualities, emotional intelligence and genuine interest in the wellbeing of the students.

I have seen these professionals, for whom their work was a vocation, display huge amounts of patience, enthusiasm and empathy in their dealings with the student. Going the extra mile sometimes without the acknowledgment or support from senior staff.

They created that unquantifiable good that is ‘trust’ in their working relationship with AS students and their careers and parents. when I think of them ‘salt of the earth’ comes to mind.

It is a well-known fact that most Teachers in big mainstream primary and secondary schools are overwhelmed with big classes, they have a curriculum to follow and implement and sometimes they need to cater for a variety of SEND needs as complex as they are dissimilar.

SEND students (AS included) are not well served by this because even when teachers are aware of the limitation and needs of AS students, teachers often feel ill-equipped and in need of additional support, training and more time for planning; we should remember that mainstream teachers are specialists in their subjects and not in special educational needs.

This is challenging for all involved: teachers, SEND students and the whole class, who many times slow down their learning as a result of this. I believe this is a money saving policy masquerading as equality rights for SEND students.

A big problem that I observed in mainstream schools for the AS student is with friendships as it is hard for them to make and maintain real friendships. A real danger is their potential to get manipulated as they are socially naïve; in one case a student was tricked into shoplifting by his ‘friends’ and there are countless cases with similar stories. The fact that they are often desperate to make friends makes them easy prey.

How parents were treated if they complained with school authorities about their children’s provision was telling. I witnessed how the most persistent parents and those who were more assertive and articulate were listened to (those who shout loudest are the ones heard).

Reflecting on what I have seen, I believe that every parent or carer of AS students must educate themselves about AS and the way the UK educational system currently caters for AS children and young people. Neglecting this could leave them without an important tool to fight for the rights of their children.

I suggest that you read the Special education needs and disabilities First Report of Session 2019 created by the House of Commons Education Committee I would like to share a phrase found in this report that I totally agree with:

“During our inquiry we met young people who told us about their experiences as young

people with special educational needs and disabilities. We were encouraged by their

confidence, determination and humour. But we were ultimately saddened by their

experiences. This generation is being let down——the reforms have not done enough to

join the dots, to bring people together and to create opportunities for all young people

to thrive in adulthood.”

https://publications.parliament.uk/pa/cm201919/cmselect/cmeduc/20/20.pdf

https://www.goodschoolsguide.co.uk/special-educational-needs/learning/mainstream-schools-for-special-needs https://nasen.org.uk/uploads/assets/e8aa4e1d-451b-4738-b3aaa0e6954a926f/SEND-Code-of-practice.pdf

https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/398815/SEND_Code_of_Practice_January_2015.pdf

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