Please don’t use therapeutic activities as rewards.

My eldest autistic son lives with daily and debilitating levels of anxiety, most probably on account of engaging with an intolerable and inflexible neurotypical world which bombards him endlessly with noise and communication that is not easy for him to decipher.

Leaving his immediate cocoon of safety requires immense acts of bravery upon his part. Some days he is frozen with fear and can only feel secure by immersing himself in television or reading. He knows that in order to break this cycle and to ensure that he doesn’t slip into a more depressed, unmotivated place he must raise his “vibrations” and “lift” himself.

In lieu of any successful therapeutic input from the Children and Adolescent Mental Health Services (Camhs), my adaptable and creative superstar has invented his own personal tool kit of mood lifting activities. They are really simple and require very little assistance from anyone else. He enjoys watching insects in the garden – focusing on the details of life that so often goes unnoticed. He watches ants enact their social hierarchy, he notes the patterns and shapes of leaves. Quite often he narrates to himself whilst doing so and becomes so genuinely engrossed that any interruption jolts him abruptly awake. As an observer it is clear to me that he has entered into his own unique meditative state, a flow state. The autistic mind is highly skilled at this – academics and professionals use the term monotropism to describe this function. It appears to me that monotropic focus is an innate part of my son’s neurology and that by utilising this skill allows my son to find peace and tranquility which in turn allows for some resilience against the chaotic outside world.

So why then would anyone suggest that this specific activity be used as a reward for engaging in tasks that are less desirable for my son? Especially when the less than desirable tasks are only undesirable because they are so anxiety provoking. Using therapeutic and self-regulating activities as incentives and rewards for task completion only seems to occur for people who have invisible conditions such as autism or anxiety.

Antihistamines would not be held from those with allergies as a reward for running through a meadow of grass and flower.

A preventative inhaler would not be kept from a person with asthma until they had run laps around a track and then given to them as congratulatory praise.

It shocks me that there are specialist professionals who do not recognise the cruelty inherent within withholding therapeutic activities for rewards. Autistic people require others to understand that particular activities and actions are needs based and are needed to provide relief from external experiences and environmental factors that are potentially debilitating for an autistic mind.

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Autistic development and imagination – professional vs parental opinion.

Being a Mum to two autistic children has given me a really great and unique perspective on life. I have a plethora of observations and insights into our familial autistic mind. However I often feel that the professional world undermine this, favouring the medicalised opinions of the predominantly neurotypical world – attaching theories and concerns where there need not be either.

Autism is referred to as a developmental condition but yet my children’s own developmental pathway is devalued through the process of therapeutic analysis for falling short of neurotypical standards of development. Both of my children have displayed particular developmental stages that are entirely “normal” for our family but these stages have been scrutinised under the professional microscope with varying conclusions established. In fact, different professionals have approached the same “issue” in astonishingly contrasting ways for each of my children.

(For clarification, I am referring specifically to almost identical patterns of behaviour, displayed by both of my children at the same age – not at the same time as one another.)

Example:

Between the ages of 11 and 14 my eldest child truly believed that he was a goblin and created a rich cultural background surrounding this heritage. He would become very distressed if this was challenged. The psychiatrist (who formed part of a multi-assessment team) concluded that this “inability” to separate fact from fiction was part of the Asperger’s profile and should be approached with sensitivity.

5 years later, and at the age of 11, my youngest son has created a complex and detailed account of how he was born under a bush. His team of (different) professionals do not view this as part of his diagnosed autism however. They believe that this “delusion” has arisen from my protecting him from the neurotypical world as I retain him in an autism friendly bubble. (Their words, not mine. I call it – meeting his needs and allowing him to be his authentic self.)

As Mum I am aware that participating in mainstream schooling did not stop my eldest from enjoying a wonderful alternative identity at the same age.

As Mum I am also aware that by allowing my elder son to develop at his own pace and to his own rules most probably protected his mental health. And, he gained his own objective perspective on his goblin persona as he matured. Naturally, and without any external intervention.

It worries me how such developmental stages can be approached in such vastly differing ways by differing professionals. It also worries me that in one instance a mother’s input is valued but yet in another instance, the same mother is considered to be “part of the problem”. Support and helpful analysis should not be “pot luck” – children’s outcomes are affected by the whim of supposed experts.

I am uncomfortable with the pathological analysis of autistic development by clinicians who are not themselves autistic. I wonder why they are so scared of autistic development that they need to intervene? Maybe fostering a respectful relationship between clinicians and autistic families and collating authentic observations of development will help to both lessen this fear and improve happiness for the children involved?

How can application forms for support services become more respectful towards those in need of assistance?

Forms and tick boxes…

Nobody likes their child or themselves reduced to a set of descriptors contained in check boxes but this seems to be the accepted method of screening for health and social care services – the route to health or social care service acquisition is via form filling.

One particular form that I have needed to complete several times over is a travel assistance form. A form designed to put good support in place to help a child with individual needs transition from home to school in a safe and comfortable manner. Part 8 of this form is entitled “Behaviour and Anxieties” and requests applicants to tick all current “behaviours” and lists examples including; “tantrums”, “fleeing”, “throwing missiles” and “grabbing”.

I am assuming that this section serves as a risk assessment rather than as an attempt to understand how a child or adult can be best supported. Further on, questions regarding use of restraint are placed.

I believe that by placing the primary focus upon a person’s behaviour, in any support or care context, detracts from delivering respectful and correct assistance as “behaviour” is surface communication only and does not correctly identify what issues need resolving for that individual or offer any indication of what needs are not being met. “Behaviours” or “behaviours that challenge” can be communications of fear, anxiety, pain, sensory overload, immediate inability to use verbal language.

Behaviour focused identification only serves those observing or in a supporting capacity to focus on management rather than make effective adaptations that work towards meeting need. Behavioural management techniques can range from rewards, punishments and ultimately restraints. All of which fail to “correct the behaviour” because they seek to administer control over the individual consequently creating more anxiety and distress.

My concern is that by focusing so singularly upon behaviour containment support staff are guided to view services users as problematic rather than as equal human beings who require empathic understanding. Given the recent care home scandals (BBC Panorama – Undercover Hospital Abuse Scandal) there is a real need to combat the undercurrent of hate towards disability that is blighting the care system. Perhaps by redesigning assessment tools so that they foster a more respectful attitude towards the people they are intending to assist would be a useful place to begin – true inclusion is designed from the outset.

Perhaps local councils could consider how can these forms be more respectful towards people?

As an autistic woman and mother to two autistic sons I am fully aware that good pre-planning and use of reasonable adjustments minimises any potential distress that may go on to be communicated in ways that observers might find challenging.

Perhaps better questions might be posed requesting what an individual is most likely to find distressing or comforting.

Trapped by paperwork.

I’m a “SEND Parent”, with two autistic sons and a plentiful supply of examples detailing unjust, discriminative and possibly corrupt local council actions. Or non-actions to be more precise.

I am desperately beyond desperate to march for Send National Crisis on May 30th, to lend my voice to thousands more in a powerful message to the government – your funding cuts are ruining my child’s education and care.

I can’t go though. My children are with me throughout each and every day. Despite having an Education and Health Care Plan each they cannot access many environments without intense support from me. Despite having requested personal assistance for them, a year on and we are no closer to receiving any support.
The skill set needed to ensure their needs are met is unique and not transferable enough to allow me to employ a standard childminder.

Having my children alongside me would be cruel. Crowded, busy places with unexpected noise and occurrences trigger their anxiety and deminish their ability to process multi sensory stimuli. To knowingly flood them with distress is tantamount to abuse.

But it’s not just about the forthcoming national protests. My ability to be heard is consistently diminished by the system in which I have to navigate in order to even request support.

“You’d like to discuss the possibility of obtaining melatonin (for sleep disturbances) for your son?” First attend a 6 week sleep course, then you’ll need to complete a 6 month daily sleep diary.

“You’d like to access specialist transport?” Here’s a 20 page form for you to detail all your child’s individual requirements even though we already have these details within the Education and Health Care Plan and sit in the same office as your child’s caseworker.

“You’d like to access some funding to enable your son to access a social activity?” Please persuade your local cluster to open an Early Help Plan and then please attend regular lengthy meetings (without childcare or schooling) where at some point we will discuss and then promptly forget your request. Several months later we may proceed to take your request to a further panel. Could you please just spend another few hours putting together all the information we need for this?

I can’t help but draw comparisons with the workhouse ethic of utilising utterly futile tasks to ensure the “rabble” are kept forever in situi unable to progress or, more importantly, mobilise their voices for change.

The mountain of paperwork and meeting attendance that an average Send parent must complete is equivalent to a full time job. While in employment a person may take sick leave or holiday entitlement – or set their “out of office hours” reply – a Send parent must file papers and respond to emails promptly or be considered “obstructive to the process”.

It feels like an endless cycle of administration to nowhere. There is so little provision to be gained after battling through form after form that it is hardly worth the effort. Yet if we do not actively participate in the system then we are “neglecting” our children.

All the time that we are not receiving adequate support, our time is stolen by the perpetual attempts to acquire support – leaving us with very little resources to speak out, seek change and be heard.

I feel silenced by an overly bureaucratic system that is supposed to assist families with individual needs.

Supporting monotropism through home schooling…

“Monotropism is a cognitive strategy posited to be the central underlying feature of autism. A monotropic mind is one that focuses its attention on a small number of interests at any time.” (Wikipedia)

When myself and my children become focused on something it becomes all encompassing and dominates our thought patterns and focus. The something can be anything – it doesn’t have to be solving quadratic equations or the inner workings of a steam train. It could be painting the bathroom grey or visiting Wales. Whatever the something is, total thought domination is likely to occur until the issue has either resolved or our cognitive focus has been satisfied through adequate attention given. Until resolution has been achieved our minds are likely to be operating in a slightly irritated and unsettled manner at having to temporarily park up whatever we really want to be attending our thoughts to.

Imagine the difficulty at having to suspend focusing on your most compelling thoughts and having to think over the top of them in order to “learn”. Having to immediately switch and tune back into the outside world can consequently be jarring and incredibly challenging. So why are we still insisting that children with an innate, cognitive way of functioning force their minds to operate in an unnatural and painful way in order to comply?

Autistic children who are hyperfocusing upon their “something” can easily be mislabelled as inattentive, day-dreaming or just rude or absent – while the neurotypical world circles around them, key information passes by as it is delivered in a way that is inaccessible at that specific point in time.

Typical education is organised into chunked time segments… Just as we are perhaps gearing up into zoning in to the focus then the activity is stopped and we are expected to transition swiftly into the next.

More specialist autism educators chunk lesson time into much smaller segments, to ensure that effort of attention towards compulsory subject matter is only exerted in small bursts. Many educators offer rewards of “special interest time” after completion of the previous task. Both of these methods disallow a monotropic mind to operate at its best.

Entering a hyperfocused state can allow for amazing achievements… I have been able to run marathons entirely in a hyperfocused state which has enabled me to disassociate my body from my mind and so ignore the painful knees, toes, calf muscles etc. I’ve also been able to achieve my most accomplished drawings whilst in a flow of hyperfocus. This has only been possible as an adult in command of my own time. In the midst of mainstream education it was mostly impossible to have enough time allocated to allow me focus in such a way.

I have begun to appreciate how a flexible, home based delivery of education can be beneficial to an autistic thinker because it can adapt and assist monotropism. My two children currently access their learning at home. As Mum-Teacher I map out an approximate plan of what outcomes the National Curriculum state as necessary. Occasionally this matches with my children’s enthusiasm but more frequently they are uninterested and do not retain any of the content. If I follow their interests and fit the outcomes around this then their retention accelerates.

Operating in a flexible manner allows my children to fulfil their potential. We began our learning this week by planning to continue with composing poetry…until my son had a sudden spark of genius in relation to a story idea. Knowing that it would be near impossible for him to concentrate upon anything else we immediately began mapping out his thoughts and quickly agreed to embark fully in the new project on Monday – no waiting until the next term for us!

My son will work entirely on this project until it is completed and completed well. He will be determined and motivated even on the bad days. He will retain all the skills and information he has gained throughout the project because his mind will be receptive. And this will be comparably more beneficial to him than working towards his SATS (assessments).

It is such a shame that our schooling system is unable to offer such flexible and individual approaches to education, particularly when allowing flow states to present themselves is so beneficial to our autistic thinkers.

#Autism

#autismbestpractice

#autismacceptance

#autismparenting

#autisticvoices

#homeschool

#SEN

#anxiety

#demandavoidance

Stop Staring. Stop Judging.

An open letter to the people who stare and should know better…

If I am sat silently beside my autistic child when he is “raging”, “destroying”, “shouting”, “swearing”, “threatening” … I am not doing nothing. I am meeting his needs, for he is not being “naughty”, he is experiencing neurological overload or extreme anxiety and can only regain control with quiet, security and space.

It has taken over ten years of hard earned experience to know that being silently present, alongside, is the only parenting style that helps him. I do not lack control or authority. I am not aimless without a clue. I do not shout, threaten, challenge or admonish him. This is because his neurology is firing on all cylinders and he cannot take on anymore information.

I am taking in information though. I can see you staring at me with an expression of judgement, contempt or shock. I can hear your mutters to one another. I can sense you gossiping. “He needs to be taken away.” And all this I retain – I carry it around with me like a dark, twisted knot that continues to belittle and shame my parenting even when you are not there.

And so a vicious circle continues. The years of autism research and training I have undertaken counts for nothing when I am hesitant in my own delivery. My battered confidence is misread as incapability and so the frowns and concern continue.

Without an audience of judgement I am a strong and assertive mother who knows when to walk away, when and how to challenge, when to show compassion, when to distract and when to use humour.

Unless you are autistic or you truly understand autism you will never appreciate the sheer capacity of strength needed to openly parent differently, and against the “rulebooks”, because it is THE ONLY WAY to not traumatise your child.

There will be hundreds or thousands of blogs written by parents of autistic children who echo the same sentiments as here. It saddens me that I am still affected by people who stare.

Please let’s reframe compassionate parenting positively. I have no desire to change my child or to behaviourally train him and that does not make me a bad mother. It makes me a patient, calm and loving one.

#Autism #AutismAcceptance

Are local authority SEN departments ableist by design?

The current national funding crisis for Special Educational Needs has created an environment whereby local authorities are operating in a systematically ableist manner. There are too few staff to meet demand and there is too little money to provide truly specialist provision – legal time frames and deadlines are regularly disregarded; there are not enough specialist placements to meet need.

As children and young people transition between key parts of their lives, towards independence, they require both stability and preparation. The current process for securing an educational placement when you have additional needs does not offer either. It offers uncertainty, delay, legal complexity and deceit.

My 16 year old autistic son is about to sit his GCSE exams. Unlike his peers in mainstream school he has absolutely no idea where he will go to continue his studies afterwards and I am powerless, as his parent, to source a placement for him independently. We are reliant entirely upon our local authority to find him a suitable placement that meets his academic and sensory needs – and the local authority is struggling to find, and fund, such a placement.

Like many autistic people, my son experiences debilitating anxiety which is predominantly triggered by “the unknown”. So at a time when my son should be focusing entirely upon his revision, he is beset by worry about his future and how he will be able (or not) to pursue his academic goals.

My son’s Education and Health Care Plan (EHCP) should have named his post 16 placement by the 31st March. It hasn’t. I regularly ring and email our local authority and I regularly seek legal advice – none of which matters as the local authority is virtually unaccountable. They can ignore my communications and if I complain I am branded as a “difficult parent”. They can delay issuing his final plan and frustrate my parental rights to appeal at tribunal. All of which keeps money in their pot for longer at the expense of my son’s mental health.

Uncertainty and the unknown are excruciating for autistic people. The current SEND national crisis exacerbates this. The system is abelist by design.

#Autism #SEN #abelism #anxiety #EducationForAll #SENDCrisis