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

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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.

Education at Home – part of the national SEND crisis.

The topic of home education is undergoing much discussion currently due to government proposals to create a register of home educated children. This register will be used to avoid children becoming “hidden away” .

My children have spent lengthy periods of time being educated at home because the educational system of this nation has failed them.

Not because I wish to hide them away and do them harm.

The educational system failed to identify and respond to their special educational needs – autism. My children battled through mainstream school everyday, riddled with anxieties and wondering why they were finding school life so difficult – strong smells, loud noises, sudden changes, too busy, teachers talking too quickly, peers not meaning what they’re saying – until they could no longer cope or pretend to fit in.

And then the system berated them for no longer coping – emotionally and physically manipulating them into attending, which of course they “refused” to comply with. They couldn’t attend because at this juncture they were incapacitated by anxiety, exhaustion and trauma. (Who knows if this would have been the outcome had their needs been correctly identified to begin with?)

It was at this time I chose to electively home educate and it was done in full view of every possible agency. I did it to protect their mental health and I did it well. I committed every hour of my day to unpicking their difficulties, restoring their mental health and planning and delivering a creative, engaging curriculum that they wanted to engage with.

I harnessed their particular interests and taught the national curriculum through the great subjects of dinosaurs, Pokemon, football and Wales. I gave them individual time and offered flexibility to meet their needs. Very similar to how school used to be (for me, at least) before teachers became responsible for 30+ pupils and hours of assessing.

After my children were diagnosed with autism, and coexisting anxiety, I thought that locating a school that could meet their needs would be easy. However, specialist provision doesn’t often cater for academic pathways, mainstream provision doesn’t cater for high level sensory needs, and pretty much nothing caters for debilitating levels of trauma and anxiety associated with school.

So, at home, my children still are. Although they are both now on roll at schools this is in name only and they are still at home being delivered an education predominantly paid for, planned for and taught by me.

It seems to me that Local Authorities want their “complex” children at home as they don’t have the correct in area provision and there are no funds for out of area specialists. I would even go as far as to say that Local Authorities deliberately place a child on roll in an unsuitable placement so the parent has no choice but to educate their child at home because the setting cannot meet need.

So before looking to demonise parents (and subsequently unleashing armies of vigilantes asking “why isn’t your child in school”) , take a good look at the system itself.

Autism acceptance over awareness. Inclusion over accommodation.

My 16 year old is uncomfortable with other people knowing that he is autistic.

(This blog is anonymous, if you know me in the non-virtual world you will already know us and that we are an autistic family. You will also know that, as a Mum, I see my children’s autism as wonderful and the unaccepting, unaccommodating neurotypically constructed social world as the cause of their struggles.)

I don’t think that he is embarrassed or ashamed that he has this diagnosis. He has many moments of pure pride for achievements due to his autistic mind. (His persistence and thorough research found our beloved family dog.)

I think he is scared.

When he was participating in mainstream education the word “autistic” was regularly banded about as an insult. (Along with “gay”.) Combine this with having to face daily taunts for being quiet, academic, unique and having “stress issues” then the experience of being “the autistic kid” becomes truly terrifying.

When he discovered that Hans Asperger’s scientific research, that eventually became the diagnostic label Asperger’s Syndrome, was conducted under the Nazi regime his terror became a direct threat to his future. What if the far right came to power? What if they wanted to eradicate people with special needs?

This threat felt particularly real to him when he became aware of a local quack seminar proposing cures for autism in our locality. Luckily his innate moral compass and desire for justice propelled him to take a stance and log the seminar officially as a hate incident with authorities.

I sometimes wonder whether his desire to blend in, unnoticed, is because he has always suppressed his autistic self in certain environments. Masking his way through his entirety of primary school and facing social and sensory challenges everyday is an astonishingly brave path to take. He tells me that he wasn’t feeling brave, nor was this a choice, but a feeling of being petrified, every single day. Scared because he couldn’t understand the world around him in the same way as his peers and scared at being discovered. Ultimately, he was scared to be different.

For me, this is why acceptance is needed alongside awareness. More awareness at primary school would have certainly assisted the diagnostic process but awareness only goes as far as to highlight difference. Reasonable adjustments, however well meaning, make the recipient stand out – anxiety is not lessened by having to put your hand up to activate your pass out of the room.

True inclusion is designing to accommodate from the outset.

If acceptance were to be valued and differences welcomed – across cultures, abilities, backgrounds and genders – and embedded within the curriculum then perhaps (not just) autistic children would be able to be their authentic selves. Protecting against entrenched mental health conditions developing and enabling each autistic person to truly fulfil their own potential – because they are proud to be themselves and can live without fear.

Utopia? Or good societal planning?

Written and published with the full permission of my son.