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.

How autism “expertise” can cause harm to autistic children.

When professionals turn against you as a parent, it is the most frightening experience of all.

For many families with autistic members, daily life can involve a non-stop merry-go-round of professional intervention. And not all of these interactions happen within the professional arena. Many professional interactions happen inside our homes as we invite teachers, psychologists and carers into our private lives to help meet our families’ most basic needs as human beings. To welcome an outsider into our private space requires us to take a leap of faith – to trust that professional motivation and intention is as they say it is.

After years of assessments, scrutiny and (finally) diagnosis, when support finally knocks on the door it is a wonderful relief. Autism “experts” with years of skill and knowledge between them, taking their professional time to listen and assist, in order to advocate alongside us.

But what happens when the expectations of professionals are not met? The autistic person is not behaving as they wish them to. The families are becoming tired of opening their home to regular scrutiny. Challenges are being made by parents to their professional judgement.

Professionals close rank and blame the parent. Autistic communication is labelled as behaviour which needs correcting. Indicators of masking are labelled as “all being fine; support needs are exaggerated”. A frustrated parent is labelled as “difficult”. A parent who is desperately trying to explain that anxiety is present; it is manifesting as anger / hyperactivity / selective mutism, is told that they are preventing progress.

And who suffers as a result of this re-framing of normal, autistic communication? The autistic person suffers because they are not being truly heard. They are being misinterpreted, yet again, as being “naughty” and “manipulative” – adding further fuel to dangerous stereotypes.

It terrifies me that, any number of different professionals can enter into an autistic person’s life and cause significant emotional harm by coercing an autistic person to engage in a way of life constructed to meet the needs of a neurotypical thinker.

There is only one way to overcome such systematic neuro-washing of autistic life, and that is to raise our autistic voices as autistic adults. Share our stories and our pain at having to either suppress to fit in or be labelled as uncooperative.

This is frightening to do as a parent because professionals wield the ultimate tool of control – the threat of removing your child. And yet if we don’t vocalise our concerns, our children must suffer the risk of being harmed by being “supported” in the wrong way.

Gaslighting by School Report

The school report: a seemingly innocuous piece of communication that constructively feeds back insight into a young person’s time at school.

As parents, we relish any praise given by our children’s teachers and seek to support any areas in which our children are not thriving. Throughout my children’s formative years, I embraced these reports, accepting all comments given without applying any critical evaluation. Why should I need to? As parents, we trust that our children’s teachers are truthful.

I began to doubt the accuracy of these reports as we (as a family) began to navigate the autism assessment process. The examples of autistic communication that I was referring to within the formal autism assessments, never tallied with the school reports that I had meticulously saved. In fact, the contributions made by school towards the assessments were so contradictory to my accounts that they made me look as if I were fabricating.

Luckily, my children did eventually receive their autism diagnoses – and then their legally binding Education and Healthcare Plan’s (EHCP’s), which stipulate the provisions necessary to enable my children access to education. If the stipulated provisions fail to materialise, then legal action can be pursued.

I have noticed how, when an individual school is not fulfilling the requirements of an EHCP, then the school report quickly becomes hijacked and utilised as a piece of propaganda. The failures of the school to meet the needs of a child are swiftly spun into how well a child is coping in their setting.

My son’s EHCP states that he requires “1:1 teaching support”. His most recent school report reads, “you are able to cope with other students being in the room, even though I know this is something that worries you a lot”.

The dangers of such an approach are twofold:

• The necessary provision is being highlighted as no longer needed. Written evidence is being provided that your child no longer requires certain support to access education. Clearly this will save individual schools money and assist them in avoiding the legal ramifications of not fulfilling the EHC Plan. However, in my experience, once support is removed, so does my children’s ability to access education and this is discriminatory.

• Emotional damage is caused to the child and their family. A misleading school report causes a child to doubt their own experience. Being told that you are coping well, when you are not, is dismissive and harmful. To create an inaccurate report for the purpose of protecting one’s own failings is manipulative, and places blame for not being able to cope in the school environment back onto the child and their family.

These tactics are recognised in law as abusive when in relation to Domestic Abuse. It is still abusive when perpetrated by an institution and greater recognition should be given to families and children who fall victim. It erodes trust. It affects mental health. It affects access to education.

5 ways to help manage autistic-anxiety (when mental health services won’t, can’t or shouldn’t help).

What do I mean by “autistic anxiety”? I mean the type of anxiety that resides within an autistic person as a result of interacting with environments designed predominantly for the non-autistic person. Noise, lights, crowds, demands and unclear instructions can create levels of anxiety within us that may eventually lead to panic. Living with chronic anxiety really impacts upon daily life but is often approached by mental health services as an internal problem to challenge and solve, rather than an external issue that could be dealt with through good accessibility planning.

I have had some direct experience of utilising the standard CBT (Cognitive Behavioural Therapy) approach to manage anxiety, as that is all that has ever been offered to support my autistic children. CBT is rooted in challenge, with the aim of therapy being to understand our anxiety responses, normalise these responses and then expose ourselves to the sources of anxiety in the hope that familiarisation and successful challenge will lessen the anxiety response in future. We have yet to find success with the CBT framework because near enough EVERYTHING in neuro-typical society is anxiety inducing! I am adverse to the treatment of autistic-anxiety on an individual level when the cause of autistic-anxiety is societal.

That being said, there are some useful anxiety management techniques that can be appropriated for an autistic thinker to help alleviate panic when in a hostile environment.

1. Breathing techniques.

Simple focus upon our breathing patterns is an effective way to regain control of our bodies. We naturally breathe faster as we become anxious which can make us feel light-headed and frightened. If not brought back under control, our vision may become impacted or we may faint. There are lots of tips and techniques available to slow our breathing down but many of these use metaphor or analogy to deliver their instructions – “Imagine you are blowing into a balloon.” “Pretend that you are blowing bubbles into a milkshake.” Not very helpful for a literal thinker. My preference is to employ simple counting techniques – “breathe IN 2, 3, 4 – OUT 2, 3, 4”. Establishing a steady rhythm can also be very soothing. Not “flashy” but guaranteed not to trigger any additional stress through unclear communication.

2. Grounding techniques.

By grounding, I mean engaging the anxious mind back into rational or logical thought. When in panic our thinking can become stuck in loops of worry making it difficult to process any more types of information. Focusing on small details immediately around us can guide our thought patterns back into more rational ones. The possibilities are many and varied; looking for insects, looking at the veins in a leaf, counting our footsteps, examining the thread detail in our sleeve. My eldest son has a formula – point out 5 things you can see / 4 things you can hear / 3 things you can smell / 2 things you can touch / 1 smallest thing. Of course, this will not be helpful if it is a particular sensory trigger that is causing distress ie, the smell of fruit juice etc. This method has proven most helpful for us when in busy crowds, such as shops.

3. Stimming.

For our family, this is the easiest and most, naturally soothing way to relax. Stimming is the act of giving ourselves sensory input and is the best way to regulate our bodies and emotions because it happens spontaneously, without deliberate consideration. Chewing, rocking, spinning, humming … When I am at the end of my city centre tolerance, I have noticed that I rhythmically tap out on my fingers or have patterns of music repeating in my mind and when I return back into the privacy of my own home I enter into repetitive jumping on the spot. When my children were younger I needed to guide them to sensory equipment that best suited their individual needs (fiddle toys / chewing gum etc) but they have taken ownership of their stinking as they have become more independent. Agony Autie describes the brilliance of stimming on her YouTube channel.

4. Anxiety Apps.

Anxiety apps are easily accessed and downloadable onto our smart devices and offer a range of anxiety management tools in one place. The majority of anxiety apps are based around concepts of meditation and mindfulness. These techniques can be hard to master if your mind is suited to concrete thought rather than abstract thought but the apps provide a visual interface that can be helpful for an autistic thinker. Many apps offer guided meditation, prompts and visual interactive activities that can be really useful. Nearly all of them offer soothing sounds and interactive breathing assistance – perfect for people who prefer visual instruction.

5. Regular shutdown time.

Not a specific technique but a lifestyle adaptation which I consider to be essential for protecting oneself against complete autistic burn out. In our household, one busy / high output day (social interaction / inaccessible environments) necessitates at least one day of complete rest in a safe environment. This isn’t laziness – it is prevention of severe breakdown. Most people require time to recover by doing absolutely nothing at home but for an autistic person, the frequency and duration of rest days will be higher and longer. Rest days will be even more effective if combined with sensory soothing! – dimmed lights, comfy clothes, quiet and calm. My hope is that one day, workplaces and places of study will see these recuperation days as a reasonable adjustment in order to promote inclusivity.

Until then, I am always experimenting with the best ways to manage anxiety and avert overload.

Autism and “small talk”. Should we pander to social convention?

“Small talk” – the social convention of making polite conversation about trivial matters.

Apparently, it is considered an important pre-requisite to forming lasting and meaningful relationships.

I have always experienced it as both painful and pointless.

There was a specific point in my life where it became excruciatingly horrific for me to partake in “small talk” – the “school playground years” – when I would be expected to contribute to conversation around lunchbox contents and school uniform with other mothers. I was terrible at it. The other mothers would talk at me about their new kitchen surfaces or weekend trip to the hairdressers. I would listen in silence, desperately trying to formulate an appropriate response but always never managing to. Gradually, the other mothers stopped talking at me and forged friendships with others, over the banalities of life.

I had no inclination that I was autistic but neither had I managed to acquire enough “social communication skills” to integrate fully into neuro-typical life. Now that I know I am autistic, I am pleased that I didn’t waste precious moments of my life talking about utter nonsense. I feel no loss for the friendships that could have been formed had I known how to correctly perform those social niceties. A life condemned to surface affability with no depth or genuine connection seems much lonelier, in my opinion.

My preference for fewer but more substantial social connections – with others that share genuine common interests – is the correct approach for me. But what about my children? As autistic young men they are both happy enough with their own company but still want to connect with others in a meaningful way. Should I teach them the skill of “small talk” to ease their transition into adulthood? Or is it a neurotypical concept that shouldn’t be forced upon a neuro-divergent thinker? At what point do we say that being autistic is enough and we do not need to change; other people should try harder to relate to us?

I spoke to a speech and language therapist recently about this. She was adamant that the more these skills are practiced, the less anxiety provoking they are, the easier they become and the easier social bonds are formed. This thought process is logical; anxiety does lessen the more an issue is normalised or a skill practised. But that doesn’t necessarily mean it is the morally correct approach. If autistic people were the majority, then perhaps “small talk” social bonding would involve mutual fact sharing or immediate, in-depth analyis of a given subject matter instead. The importance of “small talk” is only a matter of perspective, and there are many alternative ways to forge deeper social connections – like seeking out groups or activities that share our keen interests, and bonding through shared knowledge.

My position has shifted from considering “small talk” a necessary evil that must be embarked upon in order to create friendships, to viewing the acquisition of such skills as nothing more than pandering to a nero-typical majority. I don’t want to be any less autistic than I am, and I certainly don’t want my children to feel any pressure to be anything other than authentically themselves.

Everyday Discrimination – 5 phrases that, as an autistic person, I hate to hear.

What is ableism?

Essentially, ableism is discrimination against disabled people. This discrimination may be delivered directly or in-directly. A person acting in an ableist way, may not even recognise that they are behaving in a discriminatory manner – such is the insidious nature of able privilege that runs through society.

An encounter with a flippant, ableist comment (intended or not) may leave the recipient feeling marginalised or separate from the rest of society.

I am confident that most people would recognise ableism in its most potent and direct forms; name-calling, mocking, mimicking. But how many of us recognise the subtle ways in which disability discrimination occurs?

I’m autistic and so are my children. In this post I consider the comments and behaviour I have encountered that made me feel that we are just not quite good enough – that autistic minds are not as desirable as neuro-typical ones.

“I’m sorry!”

I’ve lost count of the numerous times other people have replied with “I’m sorry” when I have shared with them either mine or my children’s autism diagnosis. The issue is that we do not know why they are sorry. Are they apologising on behalf of society for the gross inequality and injustices that we regularly face, such as the struggle to access basic health and education services? Or are they offering sympathy for our differences, for the recognition that we will never be quite like “everyone else”? “I’m sorry”, then equates to a tokenistic offer of unnecessary comfort. My family are proud neuro-divergent representatives and any sympathy directed our way is misplaced.

Our life is occasionally harder than others but this is purely because of how unadaptive the outside world is to our needs. Stand by us in recognition of this, instead of offering apologies. A simple “yes” is enough.

“Everyone thinks / feels like that.”

Imagine that I have shared significant details about my individual autistic experience. To divulge such intimate information I will have considered the recipient worthy and in sharing this information I will have expected both understanding and acceptance. To be met with the response of “everyone feels like that”, immediately dismisses the validity of my experience. It also shuts down any further conversation, effectively silencing me.

I am also fairly confident that not everyone does experience life in the same way. It is often the intensity of feeling that characterises the autistic experience – so yes, we may all feel uncomfortable sitting underneath bright, white lighting but we will not all be experiencing this sensation as searing, intolerable pain.

“He/she seems normal to me.”

When spoken by peers, the phrase “she seems normal to me” indicates harmless ignorance at worst but when spoken by professionals (and I have heard this uttered repeatedly by professionals when attempting to discuss my children’s support needs) the ramifications are serious. A bone-fide diagnosis is being brought into question. In my experience it is usually a first tier professional (SenCo) questioning the judgement of third or fourth tier professional (Psychologist). By verbalising doubt, what they’re actually implying is that the diagnosis is made up or exagerrated – fabricated. Not only does this dismiss the very real-life experience of an autistic individual but is tantamount to emotional abuse (gaslighting) given the distressing impact upon the person whose diagnosis is being questioned.

Autism is considered a “hidden disability” due to the often non-visible nature of autistic presentation. An experienced professional or accepting ally may be very capable of noticing an individual’s autistic presentation, so to remark that an autistic person appears “normal” is to only highlight the in-experience of the person making the remark.

“I hear what you’re saying – we’ll consult with the relevant groups.”

Trying to raise the autistic voice within the status quo of neuro-typical institutions is figuratively akin to banging one’s head against a wall. The status quo do not want to change. They may say that they do and they may welcome consultation with community voices so as to provide the relevant “tick box” go-ahead for their project, but they do not want to commit to the expensive structural changes needed for inclusivity.

Twice, I have attempted to vocalise in meetings how a policy would impact upon the lives of autistic people. And on both occasions I was told that they would consult with the relevant groups when necessary. On the surface, this appears reasonable. In practice, it is a tool to silence a lone voice. Even though neuro-typical voices are listened to individually, a disabled voice requires a collective voice in order to be taken seriously.

“It’s just a label!”

Why do some able people steer away from acknowledging a “label”? Perhaps because a “label” is a medicalisation of a lived experience? Perhaps because they are determined to view the person and not the diagnosis, and “labels” subsequently make them feel uncomfortable? Being so caught up in how a “label” makes them feel, they are perhaps forgetting to establish how an individual with a diagnosis wishes to be identified. If an autistic person does not want to be identified by a diagnostic term then that is their decision and should be respected. Likewise, the autonomy of an individual to identify as autistic should also be respected – it is not for any other person to undermine another’s identity by claiming “it’s just a label”. Autism is not just a diagnostic signpost, it is a “membership card” for a collective peer group, with many autistic people feeling pride in their alternativeness. A “label” is also a great way to extend the visibility of an otherwise hidden collective of people. I suppose there is power in collectivism: restricting the application of a “label” dismantles a group of people to separate individuals which in turn restricts the power of their collective voice.

While these types of comments may be fairly innocuous when considered on an individual level, over time a pattern emerges – a pattern which serves to maintain structural inequality for all disabled people.

What a Tory landslide means for my autistic family…

I am a single mother. My children are thought of as “ill-raised, ignorant, aggressive and illegitimate” by our Prime Minister. Except they’re not. They’re autistic. And as a family, we rely very heavily upon the welfare state for our very existence.

I am an articulate, educated woman who cannot access the world of work outside of the home because my children cannot access education out of the home. This cash -starved, broken educational system is not flexible enough to accommodate their educational needs
despite many wonderful individuals giving it their best shot. I count myself lucky that I have not been dragged in front of a court for their “non attendance”. Many other families with children who cannot attend school due to their debilitating anxiety are
penalised in such a way.

Because diagnoses weren’t given early enough (waiting lists of over two years) my children developed chronic anxiety due to struggling along without having their needs met or even recognised.

Our local Children’s Mental Health service (Camhs) is overstretched and practitioners regularly cancel my children’s appointments. Simultaneously we are threatened with being struck from their services should we, as patients, fail to attend two appointments.
Missing appointments is inevitable when managing children whose very conditions you are seeking help with make it difficult to leave the house.

We should have regular Speech and Language Therapy. We should have regular Occupational Therapy. Every professional in Leeds knows that this will never happen. There are no practitioners available who specialise in the type of occupational therapy that my children
need. None.

We are housed in social housing but the adaptations promised to us – adaptations necessary for my children’s particular (dis)abilities – have never materialised.

I pay for as much as I can privately, out of my limited income. I receive Carers Allowance which equates to a wage of £1.60 per hour, for 40 hours per week. For that, I operate in roles of teacher, carer, social worker and therapist. I will never be able to
pay back my student loan.

There are no safeguarding issues for my children so we receive no social care support. I have tried to navigate the Direct Payment system which supposedly allows me to employ an assistant for 6 hours per week. The bureaucracy involved is complex, relentless
and professionals regularly hold up paperwork. Despite my PA working for me for 3 months, she still has not been paid by the council. I have been paying for her privately, from my Carers Allowance.

All this has been enabled by a Conservative government with a negligible majority. Along with every other vulnerable family, I am in terror as to what our lives will be like under a Conservative government with a large majority

It is a self fulfilling prophecy. Without the correct education, mental health support and work opportunities, my children will be viewed as nothing but “aggressive and ignorant” by a society now given license from the top to be nasty to one another.

How to make social invitations autism friendly.

Christmas can be a particularly difficult time of year for many groups of people. There is a presumption that we will all be happily socialising, flitting from party to party or making seasonal visits to friends and family. These seasonal expectations are delivered to us unceasingly via the endless stream of Christmas advertising. Knowing that we are unlikely to be doing so just adds to feelings of isolation. Autistic people can and do desire social contact and want to be included in life – and this can include sharing celebrations with others.
As an autistic woman, I veer between observing merriment from afar and wishing that were me and knowing my own limits – of course I can’t cope with attending a house party with unknown amounts of people in attendance. When I do receive an invitation, or we as a family do, it is almost always rejected by us. Not because we unlike the person extending the invitation but because the invitation or social occasion isn’t accessible for us. I sometimes wonder whether this is done with purpose – to ensure that we are unable to attend – but that is my anxiety over analysing a situation. I do however, feel that some invitations are tokenistic, to demonstrate to the world that they, the host, view people beyond labels. But without real thought about what an autistic person’s needs might be, it is very unlikely that an invitation can be accepted.
With this in mind, here are my “top tips” for creating an accessible invitation for an autistic person.

1. Give the invitation with enough time for preparation. A week in advance is useful. This allows enough time to mentally prepare and plan for changes to our forthcoming schedule.
2. Accompany the invitation with some information about the venue; a menu, a website, an address or map. Researching these details can help to reduce our worries relating to the new or unknown.
3. Make clear and specific plans; ensure that nothing is vague or open to differing interpretations. Definite timings and information relating to who else is likely to attend, helps us to feel secure and comfortable. “Going with the flow” or “seeing what happens on the day” raises our anxieties and induces panic.
4. Try not to make any unnecessary changes to the event. If change is unavoidable, give as much warning as possible. If we have committed to the original plan, then we will need a little more time to readjust and assess whether we can still attend. Surprises can be really unsettling for us and we welcome solid, definites.
5. Think about the venue. Is it accessible for us or will we be placed under significant sensory bombardment? Think about the likelihood of crowds, noise, bright lights, flashing lights, strong smells, spontaneous happenings. If these conditions are likely, are there nearby quieter spaces where we can recuperate?

For my son’s last birthday, we wanted to host a family meal at a local pub. We researched the venue well, asking which areas and times were busy. We negotiated ourselves a quiet slot whilst ensuring we were near enough to the playground for sensory breaks. We took copies of the menu and sent those with our invitations, knowing that our guests all had differing food tolerances. We did some preliminary familiarisation on a quieter day and spent some time scrolling through their Facebook pictures. The benefit to all this research was that we all had a great time, and there was no post event distress.

A little bit of extra preparatory organisation can make a big difference to an autistic person’s inclusion.