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

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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

Autism, emergency medical intervention and trauma.

There must be a better way to help autistic people avoid sustaining trauma during medical procedures.

It was recently necessary for my youngest son to undergo essential and emergency surgery with little to no prior warning. This sent him spiralling into both autistic shutdown and meltdown. He entered rapidly into pure “fight or flight” mode, could not process any information in relation to the need for surgery and reacted with spectacularly resistant and terrified behaviour.

Due to the nature of the injury there was no option to “wait and see” and, as parent, I made the decision to follow medical advice and proceed against the wishes of my son.

Part of my son’s autistic presentation is the extreme need to manage his anxiety by retaining control over all aspects of his life – abruptly working against this will always provoke dangerous levels of distress for him.

The management of this particular incident created trauma upon trauma due to multi-person restraint and forced sedation.

“This is kidnap. You are taking me from my home where I want to be.”

“You’ve stabbed me!”

“What happens to me, where do I go? Am I still me? But I’m not in control.”

Although there was much professional discussion around “protecting his future mental health”, ultimately, my son suffered. The physical trauma sustained – stitches and swelling – retreated quickly but emotionally he is broken. Pale, tired and switched off from the world. An unwillingness to leave the home even for his beloved dog. Veering between restlessness and silence. Shouting out “no, no, help, help” in his sleep…

As his Mum I cannot shake the feeling that I have failed him but neither can I envisage how he would have complied with the medical assessments and pre-surgery procedures without the horror of sedation. And so I am considering – what are the alternatives and how can multi-agency response to emergencies become more tolerable for autistic people?

For my son, he was surrounded by emergency and medical personnel constantly for hours. He was given no opportunity to work through his meltdown naturally and the non-abating conversation about him and invasive physical contact only exacerbated his distress. Good autism practice and autism knowledgeable staff were lost in the commotion of “emergency”. Higher ranked staff simply did not make way for the good autism skill set of more junior practitioners. I watched on in shock as an anaesthetist attempted to tickle my son into compliance without any understanding of how excruciating that would feel for him in the midst of heightened distress.

What was a low arousal room with gentle mood lighting quickly became invaded by a multitude of noise and smells when attended by eight other people.

Professionals and their strategic approaches rapidly interchanged – one surgeon drew pictures to communicate, whilst another stuck to dispensing facts, whilst another simplified their explanations and patronised my son’s intellect. One policewoman spoke in a gentle tone while another was loud and used “banter”. Consistency of approach was replaced by a whirlwind of panic – it isn’t difficult to understand why my son could offer nothing more than panic and refusal in return. Without the respite from over stimuli needed to bring about natural calming and the increasing urgency of surgical need there was no other choice but to sedate my son.

What is particularly frustrating for a parent is knowing that my child has a legal document that details exactly how his needs are best met – his educational and health care plan (EHCP). This one document should be enough to inform professionals working with my son. As should the Nice Guidelines for Autism which state that all health professionals working with an autistic child should have autism awareness training. Unfortunately the EHCP is too lengthy to be of use in an emergency situation and the Nice Guidelines are just guidelines.

Some hospital trusts encourage autistic service users to complete a hospital passport detailing any particular, individual preferences. The issue is that there just isn’t enough consistency among individual sites and people – autism “best practice” is still too “hit and miss” to be of any great benefit.

It seems that the foundations of autism best practice are not yet strong enough to transfer into emergency settings. There needs to be national protocol specifically for urgent and emergency needs and, dare I say, that these need to be legally binding.

I would really welcome a dedicated low arousal, sensory friendly and safe room in each and every hospital for all autistic people in need to access. Perhaps key autism awareness information could be condensed into an always accessible reference document for all hospital staff. Perhaps individualised “hospital passports” (detailing individual needs) could be attached to electronic health records – ensuring the correct information is available to all hospital staff as and when required.

No person should be made to feel terrified and traumatised by medical interventions just because effective autism communication was not employed.

#autism #Autismawareness #autismbestpractice #trauma #NHS #SEN #pathalogicaldemandavoidance

Dear Camhs – Autistic “meltdowns” are not used to manipulate and coerce others. Fact.

“Autistic children can use meltdowns to manipulate an outcome.” Camhs.

This was said to me by Child and Adolescent Mental Health Services (Camhs) regarding an increase in my son’s distress response to their graduated exposure plan.

It was said to me by a member of staff whose role is also to train local authority school staff in autism awareness and it was said to me within a multi agency meeting.

I am personally full of outrage at this statement which essentially undoes years of autism awareness and acceptance progression.

Meltdowns in autistic people are the result of being overwhelmed by their environments. They are a response that is characterised by temporary loss of control.

“Autistic children can become highly anxious. In some cases, children can become so overwhelmed that they can’t control their behaviour, which others can misinterpret as them being naughty or disruptive, when in fact they’re extremely distressed.” (National Autistic Society, UK)

To state that meltdowns can be used as a tool for manipulation is to suggest that an autistic person experiencing meltdown is actually in control and can therefore make behavioural choices.

Meltdown behaviour itself should be viewed as part of an individuals autism and to encourage others to view this as manipulative behaviour implies that reasonable adjustments, empathy, support and understanding are not necessary. How is this then understood by a person experiencing uncontrollable and overwhelming distress? That their experience is not valid? That their authentic self is “wrong” , or “bad”? Surely this will just create entrenched and severe mental health issues?

To suggest that meltdowns can be used manipulatively is one step away from labeling a distress response by an autistic person as naughty. And society is conditioned to meet naughty behaviour with discipline and punishment. It is simply wrong to punish the distress of an autistic person that is most likely a response to being overwhelmed by environments created for neurotypical society.

I am sure there are some parents who experience their child’s meltdowns as purposefully manipulative. But meltdowns are not delivered with this intention and so it seems to me that this is an example of how neurotypical people struggle to understand and empathise with autistic communication and response mechanisms. I am privelaged to be both a mum to autistic children and be autistic myself. Whilst to the neurotypical world, my child experiencing a meltdown every Wednesday morning because it is the day I work outside of the home may appear to be manipulative because the outcome is delay, it is actually a communication of overwhelming anxiety that I am no longer there. (And remember, having an alternative theory of mind may mean that an autistic child has real difficulties in imagining their mother safe in an environment away from them.)

“Meltdowns… They aren’t done manipulatively – they’re a loss of control.” Ambitious About Autism. UK

“Meltdowns… Are extreme reactions to everyday stimuli… Tend to be a result of an accumulation of issues… And are both out of control of the person with autism.” Autism West Midlands. UK

#autism

#autismacceptance

#Camhs

Can we trust children’s mental health services with our autistic children?

Can we trust Child and Adolescent Mental Health Services (Camhs) with our autistic children?

Where to begin?

I am just one parent, with two autistic children being “treated” for their “anxiety” by the Child and Adolescent Mental Health Services. (Camhs.)

This is our own journey…
One which I feel may resonate nationally.

Issues around lengthy referral and waiting times for the service have been reported in the media for some time. We are aware that severe funding shortages have led to systematic gatekeeping of these services, with only the most “severely affected” children being placed in active treatment.

But what happens when an autistic child finally does reach the point of active treatment?

My experience of our local Camhs service is that it rigidly promotes Cognitive Behavioural Therapies above all other approaches. Very much like our mainstream educational system, it is a one-size fits all approach. Which is problematic if you are never going to be able to fit.

CBT can be modified for the autistic thinker – a person skilled in communicating effectively with an autistic young person is employed. They might, for example, sit to the side of the young person to lessen the need for eye contact or they might facilitate conversation through lego play. The skill of the therapist is very much “luck of the draw” – in my 6 years of observing Camhs therapists attempting to deliver CBT I have only ever met one person with enough autism understanding to do so.

There is often no alternative to Cognitive Behaviour Therapy – which has been heralded as cost effective in comparison to more creative therapies such as art, drama or animal therapy. Some parents may be in a position to seek out alternative, independent therapists but that pathway runs the risk of parents being viewed as undermining the expertise of NHS professionals.

Does CBT assist in reducing the anxiety experienced by an autistic person?

If the anxiety is a response to having to function in an often unflexible, neurotypical world that agitates the innate processing and perceptual differences of an autistic person then the anxiety will never be removed. And challenging a person to encounter and overcome that anxiety is more likely to trigger episodes of trauma, entrenching the anxiety further. Those are my observations, twice over.

I am of the opinion that Camhs seek to “normalise” autistic children by setting an idealistic outcome as integration (back) into the neurotypical world. It doesn’t seem to matter that attempting to fit into mainstream society most probably contributed to poor mental health in the first place. Camhs operate from a position of recovery equals engagement within neurotypical terms.

I guess what I’m saying is that the “anxiety” experienced by many autistic children and young people could be viewed as a natural, and protective, response to a world which does not fully understand, accommodate or include them.

This does not mean that the effects are minimal – anxiety is often debilitating. But the subsequent focus should not be on how the child should change to fit back in. The focus should be on how the environment can be managed in order to support and allow an autistic person to flourish.

My first hand experience is that Camhs criticise this approach – labelling an environment that meets all the needs of an autistic person as a “bubble”. This infers overprotection of the child by the parents who seek to remove all potential triggers of distress. Camhs and the CBT model advocate that distress needs to be encountered in order for the child or young person to gain resilience. Which takes me right back to the beginning of my argument – why should autistic children be treated via a model which does not recognise their innate processing differences and seeks to place them in environments that will always always elicit distress due to innate difference?

I have had both independent and NHS crisis professionals explicitly state that managing the external environment for my autistic children is key to protecting their mental health.

For Camhs, the argument then follows that there is no longer a role for their service, if the anxiety / depression / trauma is purely “part of the autism”.

So which service does advocate for autistic lives? Autism in not a mental health condition, it is a neurological difference and yet there is no dedicated, NHS service provision that enables and empowers autistic children and young people to improve the quality of their lives. I don’t want my children “treated” so that they conform to neurotypical expectations. I want my children to find their own way of living that enables their quality of life to be good, according to them.

#autism

#ActuallyAutistic

#mentalhealth

#Camhs

#CBT

Age appropriate activities and autism. Who decides upon the appropriateness?

In my role as feisty autistic woman and Mum to two feisty autistic boys, I am acquainted with many non-autistic professionals who like to have an opinion on age appropriate activities for autistic people – children and adults alike.

They seem to be very concerned that children in particular, regulate themselves in “age appropriate” ways and engage in “age appropriate” activities.

My thoughts around this subject have strengthened following an education meeting where “access to water play” was unilaterally replaced by professionals with the phrase “age appropriate sensory activities”. Aside from this being far too general and non specific for my child, my son needs to access the sensory seeking he enjoys. It is beyond pleasure seeking for him, it regulates his emotions and physical space in the world.

My son’s mental health is vastly improved by smearing jelly on himself or by face planting in a cake. He loves rolling around in mud and splashing around in water.

He also has a plethora of cuddly toys which provide him with both comfort and entertainment.

My eldest son has a teddy bear who travels with him at all times. We lovingly call him the support bear as he has assisted with monumental breakthroughs into independence (accessing new educational settings, for example).

I know that my children aren’t alone in utilising toys in this way. I can recall an article by the BBC which focused on how a plushy lion and plushy pig supported their autistic owners to access employment.

In our home, our plushies are used in role-play where we act out a great range of social situations. Some even have Instagram accounts and help us connect with the social/digital world.

I do think that it is very short-sighted of professionals to rigidly dismiss the usefulness of these activities. Plushy toys, in particular, are props that help bridge the communication gap by offering a sense of protection. And whilst the neurotypical world remains relatively inflexible in terms of accommodating autistics then a prop that assists is of great benefit to us.

When a professional says “age-appropriate” they are meaning age-appropriate for neurotypically developing children and young people. Autism, being a developmental condition, means that we develop at a pace that is unique to us. It seems rather ableist to decide what is developmentally appropriate for an autistic person by using non-autistic markers.

I imagine that a neurotypical professional might argue that by allowing a child to engage in age in- appropriate activities is to expose them to harm, by exposing their vulnerability to the outside world. But this position is entrenched within the perspective that difference is bad and not to be respected. We have the right to be our true authentic selves and to not be hated for this.

I feel that one of the pertinent issues within this debate is that age inappropriate interests are held as markers of abuse – a parent infantilising a child? Professionals are therefore nervous to advocate outside of “age appropriate” boundaries. But autistic voices are screaming otherwise. There are many blog posts similar to mine, with autistic men and women explaining why they need to access toys, cartoons, sensory play…

We must remember that to place un-realistic demands upon children, in terms of their developmental capability, is explicitly listed as child abuse within the Nice Guidelines. (UK health guidelines for professionals.)

I certainly won’t be telling my children that they’re too old for particular items or activities.