Autism and contradictory behaviours: diagnosis called into question.

Obtaining a diagnosis for a “hidden disability”, such as autism, can be notoriously difficult to do. Especially if you have had to blend in with neurotypical society for sometime.

But what happens when following that hard-won diagnosis, people begin to question its validity? Friends or professionals begin to challenge how you could possibly be autistic because your behaviour doesn’t match rigid ideas of what autism is.

Autistic people know that “autism” is not a linear list of traits that you check yes or no to. The popular analogy of autism being a spectrum of experiences is a more accurate descriptor. For autistic people this is not a complex issue – we all find comfort or discomfort in various and differing sensory or social experiences. To the un-educated, these individual “preferences” may appear self-contradictory.

Why do I enjoy being squished in the front row at a 30,000 capacity rock concert, for example, when I can’t abide a busy supermarket?

The answer is because they are different sensory experiences. A simplistic view would be to reduce both situations to “dealing with crowded spaces” or “dealing with noise” and compare the two. But they are vastly different. At a supermarket the crowd is mobile, you are navigating through unpredictable behaviour – people stop without warning or suddenly turn around. The noise levels spontaneously change, a quiet aisle may be interrupted by a loud tannoy announcement. There is much visual clutter all around.

The noise from a rock concert drowns out all other noise – there are no competing sounds. The sounds are not unexpected, the music is familiar and predictable. Likewise with the sensory experience of touch from other people. It is a constant pressure (a deep pressure, which some autistic people seek out as pleasurable) as opposed to the light, accidental touch of brushing against someone when out shopping (which some autistic people find traumatic).

My, now adult, child has similar seemingly contradictory experiences. Speaking to a small group of people elicits extreme anxiety, while delivering a speech publicly to a large crowd of hundreds is manageable. Why is this? Why is one situation (the more commonly anxiety-inducing one) easier to navigate? “Because when people become so many, all at once, they become almost the same as none.” A singular, homogeneous being rather than a group of individuals to individually interact with.

I also think un-predictability plays a role in this situation too. Addressing a large crowd is a fairly predictable experience, crowds largely behave in expected ways – passively, as an audience. Interacting with smaller groups is a complex social experience, navigating conversational turn-taking and responding to unknown dialogue.

(This analysis also helps to explain why many people are denied autism assessments because they “have friends” – a poor marker for whether an autism assessment is valid but one appropriated by first tier professionals none-the-less. Friendships are based on predictability, when you are friends with someone then you can (fairly accurately) predict how they will respond, in conversation and situationally. Friends are safe.)

Why does any of this matter? If a person is struggling to understand our autistic identity then we can choose to exclude that person from our lives? Some autistic adults may have this privilege of being able to do so, but many autistic adults and children do not.

If the adults questioning such seemingly contradictory behaviours are professionals, with power and influence over autistic lives, then this can become dangerous.

A question that I am regularly asked about my youngest child is, “if change is challenging and causes distress, how do you manage to go away on holiday?”. My answer is always, the changes made by holidaying are far less significant than other changes made to his daily life, and so the changes are experienced as minimal. Our daily routine and structure are the same, we visit the same type of sensory-suitable places, allow for the same amount of “down-time”, bring the same clothes and important belongings, enjoy the same activities and avoid the same intolerable experiences. It’s not rocket science.

Unfortunately the impact of reducing autistic experience to simplistic patterns of generalised autistic-conformity, without analysis of an autistic persons individual needs, is potentially very damaging.

Parents (usually the mother’s), or autistic people themselves, can be accused of lying, or at the very least, treated with scepticism. The implications of this are far reaching – from being denied certain provisions to being formally accused of harming your child. All for the want of true autism understanding, and easily remedied…

Nothing about us, without us.

Autism “Awareness” – Reflections across a generation.

My children and I are openly autistic. My children were eventually given their diagnoses in 2016 and 2018. I received mine shortly after.

I grew up in an era where “autism” was relatively unheard of outside of specialist medical professions.

Diagnostic labels during my childhood (in the 1980’s and 1990’s) were restricted to “Kanner’s autism” or “Asperger’s Syndrome” and focused on rigidly perceived deficits. By the time of my children’s assessments, the diagnostic labels in the UK had evolved into the all-encompassing “autism spectrum condition”.

In a conversation with my own mum, we discussed that even if she had been aware of autism as a concept (she was certainly aware that I was “unique” and responded better to slightly off-beat parenting), what could she have done with that knowledge?

In the 1980’s there were no accessible pathways for diagnosis – our local GP wouldn’t have had any autism knowledge.

My children and I share similarities of experience, we all traversed the mainstream educational system with no recognition of our neuro-type and no adjustments made (save for the occasional insightful and skilled teacher). I was made to stand under the clock at break time for being “too loud” (emotional regulation differences) in 1985, and my son was given detention for smearing paint (sensory seeking) in 2011.

Experiences such as these became embedded within our development – we weren’t being willfully disruptive, we were being authentically autistic, and punished for this. Repeated exposure to such punitive discipline only breeds distrust, fear, anxiety and anger. I internalised these feelings, hated every minute of being within the school environment (aside from learning) and spent my entire school years living with acute anxiety. I coped by taking “sick days” and immersing myself in the arts curriculum. For my children, with more focus on attendance and testing, they lasted as long as they could within the school system before it became intolerable for them and they could no longer attend.

This suggests to me that coping within the school system without a diagnosis was much easier for me (in the 1980’s), before the introduction of school league tables, attendance regulations and the national curriculum. Read into that, what you will.

Obtaining a diagnosis has certainly been significantly easier for my children’s generation than it was for mine. When approaching the GP and school staff in 2015 for those initial conversations, they had at least heard of autism. There were standardised pathways to place us on and information about autism was easily found.

Now that my children have official diagnoses, they have significant legal protection under the 2010 Equality Act.

This piece of legislation protects them against discrimination and gives them the right to have reasonable adjustments made for their neuro-type. For my children, this is normal.

For me, this legislation is of huge significance – for I was 19 when the very first useful piece of disability protection was legislated for. (The Disability Act 1995.)

The importance of these pieces of legislation is significant. We now have quiet “autism hours” in shops and leisure centres, and access to disabled parking badges. As a result, the general public are much more aware of how to improve inclusion for autistic people – shop staff recognise “hidden disability” identification. I have worn “autism ID” bracelets and, without having to explicitly request anything, have had museum staff show me where the quiet spaces are. My Mum had to manage by avoiding environments that made me scream.

The flip side of increased awareness and inclusion is the increase of deliberate bullying – name-calling or ostracizing. I don’t recall ever being called weird as a young child. Sometimes I was included in play and sometimes I was perfectly happy engrossed in my own world. This is in stark contrast to my son’s experiences though – he was pushed down the stairs at school for being “weird”, and the insult “you’re autistic” was regularly banded around the playground. Recently, as an adult, I have been called “imbecile” and “weirdo” by neighbours who know we are an autistic family.

And so my conclusion regarding “awareness” is no different from most other openly autistic people. “Awareness” is good because it has enabled legislative progress and greater strives made towards inclusion, but, we are a long way from ACCEPTANCE – the freedom to live our authentic lives without encountering hate.

Why is early autism diagnosis so important? (My guilt as a mother.)

I’ve read many articles citing a link between early autism diagnosis and best long term outcomes for autistic children. The arguments presented around this largely focus upon, the sooner interventions can be applied to an autistic child, the best chance of a successful adulthood for the child. Implicit within this outcome is the desire to assimilate autistic children within the neurotypical world.

I don’t want this for my autistic children. I want them to be authentically happy within their own identities. If, as adults, they then choose to adapt and adjust in order to assimilate, then that is their prerogative.

However, as a mother I retain much guilt at not recognising their neuro-type much earlier in their childhood, and I retain huge guilt at not pursuing assessments and diagnoses much sooner than I did. I listened to the nay-sayers too much. I listened to their school when they told me all was fine. I listened to family members who told me that they were “far too intelligent” to be autistic. And I listened to their father’s who told me my parenting was at fault; I wasn’t firm enough, I didn’t establish or reinforce boundaries.

I internalised these opinions and sought out parenting support in desperation to stop them “misbehaving”. I tried everything on trend at the time – the “naughty step”, time-outs, confiscating toys, reward charts, sticker books… Applying these strategies when they were having “temper tantrums”, which of course did nothing but exacerbate their distress. Their early childhood was one big battle of wills between discipline and neurological overload. Only I didn’t know they were in neurological overload because I was repeatedly told I wasn’t being firm enough, which in turn led me to become even firmer.

I despise myself for exposing them to such intolerable situations, created by my own inability to recognise that these rigid parenting strategies were causing them harm. I grieve for the happiness and joy it cost them. I am so sorry.

Parents of autistic children are routinely signposted to parenting courses at the beginning of the diagnostic journey. The logic is that should “issues” still persist after parents have consistently applied “good parenting”, then further investigation is warranted. But the damage inappropriate parenting strategies can cause to a still malleable, autistic mind is seemingly not considered.

No firm boundary or reward system will prevent certain stimuli from causing overload to autistic senses, for example.

This is why early diagnosis is so important. Not in order to apply speech and language therapies, or to access occupational therapy programs. But to empower parents to parent in ways that nurture and support a neurodiverse mind, not to unwittingly thwart the gift of difference.

Is Access to Specialist Autism Education Based on Need?

In the UK, if an autistic child is failing to thrive in a mainstream school then the school (or their family) can apply for an assessment of need to establish whether a more specialist provision is necessary.

This assessment can become complex and the search for a more appropriate school can be lengthy. Specialist autism provision (particularly local authority provision) is chronically underfunded and there are too few school places to match demand.

Local authority “specialist” schools tend to be so generalised or tailored towards the support of physical and / or learning disabilities that they become unsuitable for an autistic student. Particularly a student who requires a quiet and stable environment, an academic curriculum and staff who can understand and reciprocate neurodivergent communication.

This is when specific independent schools and colleges designed exclusively for autistic students become appropriate considerations for schooling. There may be just one or two of these provisions within an area. Many children who attend these placements travel in from a different city or county. Because the support given within these placements is specific and tailored to need, there are fewer places on offer.

So what affects the success of obtaining a sought-after specialist, autism placement for a child?

On first consideration it would appear that access is truly egalitarian – each admission is overseen and funded by the relevant local authority. The process by which this occurs is based entirely upon the needs of the child, which in turn is assessed by a plethora of differing professionals, including consultations with potential schools. This all appears fair and just.

However, local authorities operate with a preference for keeping children within area and within local authority provisions – keeping the money “in house”. Closed professional meetings (meaning that parents are not invited to attend) during assessments often lead to plans being tweaked to fit available, local school placements. My child for example, does not have a learning disability and is academically capable should his anxiety and communication needs be fully supported. But, the school he is on roll at does not offer GCSE qualifications and so his academic potential is minimised and dismissed (in many varied ways) by our local authority in order to ensure he fits the criteria of the school.

How are such outrageous manoeuvres counteracted? By parents having the knowledge, tenacity and available funds to do so. Based on my personal observations over the last five years, autistic children who have educated parents with at least some minimal access to private funds, gain the highly sought after independent provisions.

Local authorities do not hand out independent placements as a first choice. They will always seek to place a child in one of their own maintained schools – however (un)suitable this may be. A detailed knowledge of procedural guidelines and law is key to challenging such decisions but parents must know where to seek this out. They must be able to understand often complex information and be able to proactively seek out support for themselves. It comes as no surprise that availability of preliminary free legal education advice is also highly sought after. Waiting lists for advocacy support services are lengthy and thus often no use when having to adhere to the mandatory timescales of challenging a local authority decision.

Local authorities know this and they use it to their advantage.

To successfully counter an inappropriate school placement a parent must acquire second opinions – independent experts, to reassess their child. There is an industry of independent therapists and psychologists who collectively profit well from the chronically underfunded “SEND” system and who would experience a dramatic loss in earnings should proper funding be allocated in order to expand specialist, autism provision.

As parents we love our children and want to see them thrive and receive an accessible education that they so rightly deserve. So we pay anything and everything we can afford to try and make this possible. I am a lone parent with very little disposable income, yet I have spent approximately £5,500 in obtaining additional reports and legal advice just to ensure that my child’s needs are accurately reflected in local authority documentation. And we are still a long way from finding a suitable school for my child.

I feel that I am an easy target for my local authority. I am not wealthy. I am not supported by my child’s father; financially, emotionally or practically. And these weaknesses have been exploited in order to withhold accurate assessments of my child’s needs.

The allocation of specialist autism school placements is not just affected by the political choice to restrict funding in this area, but by local authority strategic gatekeeping which favours the richer and educated families.

There are children who are being dually discriminated against because their neuro-type is not catered for within the mainstream educational system, and their parents do not have access to the resources necessary to challenge this discrimination effectively.

How best to support an autistic child or adult when they are experiencing “shutdown”.

Autistic shutdown happens when our minds and bodies become overwhelmed by our environment or by the demands placed upon us. It is an involuntary, safeguarding response to outside stimuli. It can happen as an immediate response to a single environment or it can happen after a sustained period of interaction without the necessary recuperation.

When autistic children and adults interact regularly with an environment that has not made useful accommodations or adjustments our processing systems tire quickly because of needing to work additionally hard. (In a school setting for example, we become tired not just from studying and attending to learning, but also from the proximity of people, extraenous noise, bright lighting, strong smells…) Without sufficient rest our minds and bodies begin to “shutdown”. For me and my children, verbal speech and social interactions are the first elements of ourselves to cease “functioning”.

So how can we help an autistic person who has reached this elevated level of exhaustion? These are my thoughts based upon my experiences as both an autistic woman and mother to autistic children.

1. Understanding

It is crucial to recognise that when “shutdown” occurs it is not purposeful, we have no control. Nor are we at fault, lazy or simply not trying hard enough. The external environment has disabled us by not being accessible enough to facilitate our long-term inclusion. By offering us understanding, you offer us respect and allow us to be our authentic selves, making it easier to trust that you are considering our best interests.

2. Acceptance

Recuperation will take as long as it takes, and acceptance of this is the quickest and kindest approach to take. Each individual person will require a different amount of recovery time but in my families experience, “shutdown’ that occurs due to cumulative processing exhaustion takes much longer than an immediate “shutdown” response. It is also my experience that any efforts to cajole, speed up or challenge “shutdown” will only affect us adversely and make recovery much longer.

3. Love and Care

I accept that it is difficult for parents and / or carers to witness their loved ones struggling – we want to reach out and make things better. We want to demonstrate that we love and care for our autistic family. This is still possible, we just need to ensure that our approaches are not too much for an autistic person in “shutdown” to cope with.

Conversation may require too much processing effort. I know that when I am exhausted, I can think fluently but the formulation of words into speech stops. Conversation via speech isn’t necessary – communication via notes, social media messages, drawings or memes can be really helpful. And if two-way conversation in this alternative way is equally exhausting, then simply be with them. Sit in the same room, silent but alongside. (With permission of course.) Sit and watch television with them. Sit and watch them play video games. All you need to do is demonstrate that you are there for them, when they are ready.

I’ve chosen to use the word “shutdown” throughout because as a descriptor it is effective. However, it is perhaps more useful to think of “shutdown” as “necessary recuperation time”. We wouldn’t remove a cast from a broken limb before it had healed, and we shouldn’t push autistic people back into the disabling environment before full recuperation has occurred. (Changing the disabling environment so that recuperation isn’t necessary however, is infinitely preferable.)

Weather – sensory processing and being autistic. 7 great ways to combat sensory distress.

As the temperature over the weekend plummeted to minus 3 degrees here in the UK, my sensory distress rose simultaneously. When it gets cold, my skin prickles. I am aware that I am cold but cannot abide long sleeves or itchy fabrics. I’ve always had acute intolerance of clothing, it was one of the markers that assisted me in gaining my autism diagnosis, and as a result I much prefer a warmer temperature where I can wear as little clothing as possible. This is the only negative about winter for me, when it snows I am delighted – a thick snowy blanket is perfect for covering visual clutter, and watching flurries of snowfall is mesmerising in a very stimmy way.

But, this recent snowfall did get me considering how different types of weather impacts upon me and my (autistic) children in a sensory way. And, how over the years, we have come up with different strategies to combat any discomfort suffered.

1. The cold and clothing.

For those with hypersensitivity to fabrics like me, you do not necessarily need to be wearing thick or woollen clothing to stay warm. I don’t really change over to different, winter clothing but layer my familiar cotton clothing together. This can also work well if there are parts of your body that you cannot bear to cover (arms and neck for me!). I layer clothing on the sections of my body I can cope with (leggings under linen trousers and vests under t-shirts for example), rather than force myself into the discomfort of a jumper or cardigan. I think we are really lucky to have so many different fabric types to choose from now. Long gone are the days of having to tolerate hand-knitted jumpers.

As I have become older, I have realised that much of my winter discomfort has been around having central heating on. It seems to dry out my skin, which in turn increases my aversion to clothing. Rather than setting my thermostat to regulate the heating, I find that interspersing an hour of heat with an hour of none, really helps me to tolerate the artificial climate.

2. Snow and brightness.

While a snowy blanket can be wonderful for the soul, the starkness of an all-white expanse can be painfully bright to those with more sensitive eyesight. My eldest son has extremely sharp sight but struggles with any expanse that reflects light – snow, sand, water. When we realised that it was this that was causing him distress on snowy days, the solution was straightforward – sunglasses.

3. Wind.

With any sensory issue, tolerance will be determined by your level of sensitivity to it. My youngest son is typically more hypo-sensitive to stimuli and often seeks out specific stimuli in order to feel good – wind is one of these pleasurable experiences for him. He loves the pressure and the exhilaration. My eldest son cannot abide wind – it causes him great pain and discomfort, particularly to his ears and hearing. (Again, his hearing is acutely hypersensitive.) When he was younger, ear muffs were perfect, but then there became a time when he felt self-conscious about wearing them. For us, the answer was in acquiring a “deerstalker” hat – a hat with ear flaps.

4. Rain.

My aversions to rain are around rain dripping onto my neck, or my clothes becoming sodden, clingy and then warming back up again. I’m cringing just thinking about it. My eldest son shares my intolerance of wet, clingy clothes touching his skin. (Just for reference, my youngest son likes splashing in any type of water fully clothed!) Logically, the solution for us would be to wear adequate waterproof clothing but much clothing that is designed for rain, is rigid and constrictive (which can be exceptionally intolerable for skin that is hypersensitive). Many types of waterproof clothing have been chemically treated which can often leave a repulsive smell (if you are hypersensitive to such things).

A giant umbrella can be preferable, as long as you have the ability to hold one for lengthy periods of time. (Warning – carrying a large umbrella often entices other people to want to huddle underneath with you – if you require a lot of personal space, this might not be the best option.)

5. Thunder and lightning.

Very, very frightening. Well, yes, it can be. It’s unpredictable, surprising and as such, can startle people “an intolerance to uncertainty”. It can also be very loud, with a frequency that triggers a flight response. Similar to fireworks, the decibel levels and sporadic nature of the noise can really unsettle an autistic person. Ear defenders can be useful, as can counting the time in-between booms (as this helps to lessen the unpredictability). Weighted blankets can offer reassurance, as can creating a den under a table or in a cupboard.

6. Humidity.

The effects of humidity upon the body are largely; discomfort at feeling sticky, difficulties breathing deeply, and head pressure. An autistic person may feel all of these in an extremely intense way, making it both painful and difficult to concentrate upon anything else. Cool packs applied to the head, chest and wrists can help – as well as alleviating the feeling of “sticky”, a little weighted pressure can help emotional regulation (breathing issues are always exacerbated through panic, so trying to stay calm really helps). On really humid days, changing location can be the easiest and quickest way to alleviate distress. A trip to your local wood, or hill could bring some much needed temporary relief during a humid day.

7. Heat and sunshine.

For someone who is predominantly hypersensitive to stimuli, heat may quickly overcome them. For those who have a tendency to be hypo-sensitive, the effects of heat may not be easy for them to recognise. Having one son who is hypersensitive and one who is hypo-sensitive I have found that scheduled timekeeping is the best way to ensure that they both stay safe in the heat. For example, playing outside for half an hour is followed by half an hour indoors.

The application of suncream is notoriously horrible for my family, with the cream based lotions being far too greasy for tolerating. Especially if needing to wear clothes alongside – a hem that is “contaminated” with suncream feels different (heavier and stickier) and can feel like a slap everytime it touches against the skin. The invention of sun protection in a spray has been revolutionary for my family – much lighter, and much more tolerable. If this is still too unbearable, I have known some parents to invest in UV protection clothing.

For me, as a child, I found most things sensorially distressing. As I have got older, some of the distress has lessened and I have been able to tolerate a wider range of clothing, for instance. But what makes it much easier for me as an adult, is being able to make choices regarding clothing etc for myself. I struggled to explain why I couldn’t abide long sleeves when I was younger (I may not have even made the connection myself) and so was often mistaken as being “fussy” or “difficult”. Overall, taking a creative approach and testing different solutions can help when sensory distress is high.

Being bullied as an autistic adult.

Bullying is cruel and harmful, and when it is motivated or exacerbated because the victim is disabled then it becomes hateful. But what happens when the abuser is ignorant of particular “hidden” types of disability, such as autism. Are the bullies still accountable for the harm they inflict because they are ignorant of how an autistic person presents themselves?

How do services, such as the police, respond to such hate incidents? Are frontline professionals skilled enough to unpick such dynamics of abuse?

As an autistic woman, by the age of 44 I felt confident that I had left all my years of being bullied behind at high school. It was a shock to my nervous system when I began to be bullied by my adult neighbours. Without going into specifics, my neighbours undertook a deliberate campaign to cause me ongoing upset by restricting my ability to go about my daily, everyday, activities.

Name-calling was rife – on one occasion two adults screamed “you’re a weirdo” and “you’re a f***ing idiot” directly at me, and in front of my already anxious (autistic) children. They qualified this language use because I hadn’t directed my enquiry to them in a neurotypical way, like a “normal person” – “why can’t you act like everyone else?”

Tactics swiftly moved on to them forming allegiances with other neighbours; harnessing gossip, rumour and spreading untruths with the sole intention to isolate and ostracise me from the other neighbours.

For someone who is already set apart from the immediate community because of innate, social communication difficulties, the sense of injustice and pain at being treated so unfairly is still strong. Using social greetings and making polite small talk is not something I naturally excel in. I don’t have a social smile, which I have been told, makes me seem as if I am “stuck up” – I give the appearance that others are beneath me, apparently. (In actual fact, I am quite often so terrified at initiating social contact that I walk on past a neighbour, giving the ground my sole attention instead. I’m not being rude, I am just not skilled at greeting other people.)

Being isolated in such a way leaves few options for self-preservation when bullying rears its ugly head, and seeking support via official avenues becomes imperative for maintaining personal resilience and seeking resolution. But even seeking assistance in this way is not the panacea one would imagine. I recall desperately trying to explain the hurt caused by being called a “weirdo” to a bemused call handler who was adamant that such name-calling was not motivated by hate and could not be classed as such.

Being autistic very often intrinsically sets one apart from non-autistics for a myriad of reasons (put simply, we often cannot understand them, and they often cannot understand us). This doesn’t place one party as being superior to the other – just different. And so ridiculing someone for their difference (whether explicitly naming that difference or not) is still hateful, because it purposefully identifies “difference” as the target.

However, the real injustice seems to me to be the inability of support services to assist in redressing the power imbalance underlying this specific type of hate bullying. In a society where autistic people are still grossly underrepresented within positions of power, the current balance of power swings to neurotypical folk, who are skilled at adapting their communication style to each circumstance and for the benefit of themselves. Without a good understanding of how autistic people may communicate, official services cannot truly support victims of autistic hate crime until they recognise that those conducting the bullying are only able to do so because their “non-difference” gifts them with the power of being in the social majority.

I feel shame at being bullied. I am embarrassed, distressed and intimidated. The hostility directed towards me makes me feels as if I am in the wrong. My natural instinct is to hide and avoid all the additional, complex and conflictual social communication that is intrinsic within reporting hate. But it is only through speaking out – loud and proud – that difference will be understood. Without understanding, difference will always be sought out and targeted.

Education and Health Care Plans: What’s the point?

I often find myself pondering, what’s the point to Education and Health Care Plans if they are largely ignored by schools and the overseeing authority?

Education and Health Care Plans (EHCP’s) are legally binding documents which stipulate the specific additional needs of a child or young person and what provision the Local Authority will make to ensure that these specific needs are met.

EHCP assessments are supposed to be comprehensive and led by the individual needs of a child. However, in these cash-starved times, it is becoming increasingly common for Local Authorities to issue plans that meet the needs of their local resources, rather than those of the child.

For many children this will be okay – their needs will be provided for in more generalised or mainstream settings. But there are specific groups of children whose needs are not being provided for. Being autistic with co-existing anxiety seems to fit into this category – requiring specialist autism and mental health support, quiet settings with access to academic curriculum. In our Local Authority there are little to no providers for such “complex” presentations. (I find that our L.A uses the descriptor “complex” frequently in relation to my children – I find this obnoxiously horrid. Their requirements are clear, the lack of provision is what renders their circumstances “complex”.)

For the best part of four years I have had no choice but to issue legal challenges to ensure that my children’s EHCP’s accurately reflect their need. Legal challenge is stressful, exhausting, expensive and places the parent in the role of state enemy number 1 – “difficult parent” – potentially the reason the child is “complex”

With resilience and persistence I have managed to secure plans that are tailored for my children. I know every detail contained within their plans and it irks me greatly when a) settings appear to have not read the document and b) the overseeing authority does not oversee the plans implementation.

Most recently it has felt to me that the default position of both provider and authority is one of: most of the plan isn’t necessary, we agreed with parent rather than continue to costly tribunal proceedings and we have no intention of ensuring the provision is delivered.

For my children, many legal provisions have never materialised – regular speech and language sessions and regular occupational therapy, for example. Without these assistive therapies, anxiety relating to social interactions has increased, which in turn has attracted the attention of professionals – “why is he anxious” (are there problems at home?), “why does he not have comparable friendships to his peers?” (what is going on at home?). I advocate that it is the provision that is missing and that is why professionals have not seen “progress”.

I have been in meetings, in capacity of mother, and quoted the specific provision contained within these legally binding documents and relating to the communication aids necessary to enable my child’s voice to be heard … Only to be criticised for requesting that this is provided.

I have been present during transitions into settings when my child is distressed because their key worker is oblivious to the specific strategies (detailed within his EHCP) needed to ensure a smooth transition. And yes, as mother I have been blamed for the distress caused too – for unduly influencing my child because of my own “anxiety”.

EHCP’s are supposed to deliver equity. Ensuring that our children receive an education (and childhood) that is comparable in quality to peers without additional support needs.

There is no equality. There is no provision. There is no money. There is no political will to provide the necessary money. And so the individual is blamed instead. Usually, the mother.

Which brings me to my opening thought – is there really any point to an EHCP?

Asking for reasonable adjustments as an autistic adult : 3 key pieces of advice

I am an autistic woman who has so far navigated through life without having any adjustments made. I am articulate and reasonably confident at speaking in front of others and had never considered asking for adjustments. I thought that I was coping well.

However, life began to become more difficult for me when I found myself needing to attend and actively participate in regular and lengthy meetings. These meetings left me feeling drained and exhausted, and not just mentally. I would be physically shaking and nauseous for sometime afterwards because of the additional exertion necessary to perform on par with the rest of the attendees. I realised that without having the necessary support or adjustments, my ability to regularly attend these meetings would be severely compromised.

I began by approaching the meeting chair and asking if there was any support that could be put in place to help make meetings easier for me. I explained that I was regularly left exhausted but did not share my diagnosis. This approach was met with bemusement and no action.

My next approach was to attend meetings with a support person who would make notes on my behalf. Having someone to take notes on my behalf meant that I could focus upon verbal participation and respond directly to any matters arising.

With demands for such support services high, the individual support I required was not always guaranteed. Without a scribe my ability to function effectively enough in meetings rapidly deteriorated. It was at this juncture that I decided to approach an advocacy service.

1. Consider using an advocacy service.

In the UK we have national and localised advocacy services. Some provide generalised support and some provide specific autism support. In my experience, both have the necessary skills and knowledge to be of great assistance. My advocate maintains regular contact with myself and acts as an intermediary with relation to organising meetings. We discuss desired outcomes for each meeting and then discuss the content, post-meeting. This is particularly helpful for me in ensuring that I have correctly interpreted any implied communication (communication is not equal if conducted with inference instead of directness).

An advocate can also speak on behalf of a client (always with consent), or can intervene to request certain protocol is followed. For example, I need a little bit of additional time to process verbal information. This can impact my ability to respond quickly with any questions (for clarity or for challenge). With these support needs in mind, my advocate requested a few minutes silence towards the end of a meeting to allow me sufficient time to respond. Unfortunately, other attendees did not respect this request and used this time to begin an entirely new topic of discussion that I also was required to contribute to. And this is the point at which we turned to the law…

2. Research your legal rights.

In the UK we are protected by the Equality Act 2010. Section 20 refers to the duty to make adjustments.

“…where a provision…or practice…puts a disabled person at a substantial disadvantage in relation to a relevant matter in comparison with persons who are not disabled…requirement to take such steps is reasonable to have to take to avoid the disadvantage…”

A company or organisation do have to consider cost in relation to whether the request is reasonable. But, from my personal experience, adjustments for autism inclusion do not need to be expensive or difficult to implement.

For me, I need advanced warning of meeting dates, times and locations AND warning of any changes to these. I need additional processing time, and short breaks should the meetings be lengthy. I need a scribe or permission to record meetings – so that I can attend to the immediacy of verbal communication and to check back for content accuracy at a later date. I need the option to clarify matters or respond to decision making after the meeting has concluded.

3. Keep good written records.

When asking for adjustments it is beneficial to put this request in writing – emails are great for this purpose. Follow up any telephone conversations or meeting discussions with an email of what was discussed and / or agreed. A written request does not have to be legally worded in the first instance but a clear description of what you require and why this is necessary for your inclusion ensures clarity from the outset.

If your requests are declined, or granted but not adhered to in the future, then these written records may help you to legally challenge such. If you feel you are being failed with regards to adjustment implementation, keep a chronological log of incidents and issues. Request in writing that your agreed adjustments are followed and include a manager within this request. For any subsequent issues it would be beneficial to seek qualified legal advice.

I have only just requested reasonable adjustments for myself and I am so far hopeful that they will allow me to participate more effectively in meetings etc. Some professionals can be dismissive towards such requests – with the implication being that we are asking for special favours rather than asking for our legal rights. It would be nice not to have to ask. It is, after all, respectful to include others from the outset.

De-Constructing the “bubble” argument – why it is okay to create an autistic friendly home.

The “bubble” argument : used by professionals in order to blame parents for parenting their autistic child well.

“You have created too much of a bubble for your child.”

By creating a safe and autistic friendly home space (professionals argue that) your autistic child will be ill prepared for life in the “real world”. The “real world” will therefore cause momentous amounts of distress so that your child will never learn how to cope outside of the home, or outside of your care.

Before I begin dismantling this ableist nonsense, I think it’s firstly important to highlight how the entire concept is presented in metaphor. This is how autism professionals speak to me (an autistic woman) and how they deliver information to autistic families – ensconced within indirect and unnecessary flounce that is often impossible for an autistic mind to decipher.

For the sake of clarity, MY understanding of what professionals mean when they tell you that you are creating a bubble for your child (ignore visual image of  child trapped inside a giant bubble), is that you are creating a good environment which meets the specific needs of your child.

What I think professionals THEMSELVES mean by this, is that parents who create such a “bubble” are deliberately shielding their child from outside influence – in much the same way as a cult operates – seeking to influence their child into rejecting “normality” and thus inflicting emotional harm.

Maybe their position is more nuanced than I have presented here, but if communication is only sent via metaphor then there is no guarantee that the two parties will ever reach an understanding.

The first issue I have with this “bubble” argument is the implicit emphasis placed upon needing to acclimatise to the “real world”. Why? Why is the aspiration to be able to blend in effortlessly within a sometimes, intolerable, neurotypical world? Is an autistic experience of the world not “normal” or “real”? – it seems pretty real to me.

The whole argument is positioned from the perspective of an abled person with no lived experience of how inaccessible the “outside” world can very often be.

And so my second point is around professional non-understanding of the need for respite from the demands of the “outside” world; navigating complex verbal communication, absorbing endless streams of multiple information input, processing continual sensory bombardment. We need our houses bto be our safe havens in order to calm and cleanse ourselves from the intolerable. Without our autistically accessible, private spaces we are unable to fully relax and prepare ourselves for the next venture “outside”. The long term implication of never being able to fully recuperate from accessing “normal” is exhaustion and mental health crisis.

So my argument – as an autistic woman and parent to two autistic children – is that our “bubble” is not there to separate us from “reality” but is rather, a necessary aid to our participation.

Unfortunately, the “bubble argument” will continue to circulate for as long as there are funding shortages within autistic (S.E.N) provision. Sourcing necessary adaptations – both within the home, and education – is expensive. The “bubble argument” provides the perfect justification NOT to make such provision.