Autism Support Cumbria

Autism Support Cumbria Autism Support Cumbria provides personalised services working with children, adults, families, busin

Free webinar:
22/08/2025

Free webinar:

Expert resources, events and courses for Autism from internationally recognised experts Professor Tony Attwood and Dr Michelle Garnett.

I suspect, sadly, that this will resonate with many…..
12/08/2025

I suspect, sadly, that this will resonate with many…..

A demand for change
To Keir Starmer, Bridget Phillipson , UK Government, The Labour Party Chris Packham, Children's Commissioner for England

Wales 🏴󠁧󠁢󠁷󠁬󠁳󠁿 Mark Drakeford

My name is Michaela Silsby.

I am the mother of Sahara , a bright, quick-witted, mathematically gifted 14-year-old girl who happens to be autistic and have ADHD.

And let me be absolutely clear: your system is failing her.

Not just once. Not just here and there.
At every single level.

We are done being polite about it.

Mainstream education in the UK has become a hostile environment for children like my daughter, children who learn differently, feel deeply, and struggle to fit into the narrow box your system demands.

I’ll also add, this does not just apply to Mainstream even Special education settings specifically designed for SEN children, are not fulfilling their duties and responsibilities.

We have done everything asked of us.
We have followed the rules, jumped through every hoop, chased every assessment, sat through endless meetings with professionals who barely understand the word “neurodivergent”, never mind the actual needs of an autistic or ADHD child.
And what have we got in return?

Dismissal.
Gaslighting.
Delay.
And damage.

You talk about inclusion. You put it in your policies, in your school prospectuses, in your parliamentary speeches.

All we have encountered is schools worrying about attendance, not education, not inclusion, not how they’re causing damage, but bums on seats, and how many fines they can spin out because of this!

Let me tell you the truth from the ground floor: inclusion in this country is a lie.

Because here’s what inclusion has looked like for Sahara:

• Teachers misinterpreting her anxiety as defiance.

• Her masking being used against her, “She’s fine in school” — while she crumbles the minute she walks through the front door.

• Sensory overwhelm ignored. Her needs dismissed.

• No timely access to support. No understanding. No safety.

• Being openly mocked by school staff due to her disabilities.

• Being put into isolation rooms in school when they can not meet her need, from 9 until 3pm , no access to proper work or breaks.

And me — her mother forced to carry it all.
Be her full-time carer, teacher, therapist, advocate, and emotional lifeline.

While also being patronised, blamed, or outright ignored by a system that should be helping us, not harming us.

You should know this isn’t just frustrating.
It’s dangerous.

Suicide is one of the Leading Causes of Death in Young People aged 5-24.

• Autistic individuals are 7 times more likely to die by suicide.

• In some studies, over 50% of autistic girls have considered it.

• Self-harm rates have doubled in young people aged 10–14 in the past decade.

You don’t need a task force to see the link between school trauma and mental health crises.
You need to listen to families like mine, who are waving red flags while your system continues to bury its head.

How many children need to be broken before something changes?

How many mothers like me have to give up our jobs, our health, and our peace just to keep our children from falling apart?

You have failed Sahara.
You are failing thousands like her.
And we are done waiting patiently while the damage piles up.

We Demand the Following Now:

1. Mandatory, in-depth SEND training for ALL school staff.

2. Immediate reduction in assessment waiting times for EHCPs and neurodivergent evaluations.

3. Accountability for schools who breach the Equality Act and fail to provide legal reasonable adjustments.

4. Protection from off-rolling, unlawful exclusions, and “managed moves” that push SEND children out.

5. National standards that include lived experience of autistic, ADHD and disabled young people and their families.

6. Schools being held accountable under section 42 of the Children’s and families act 2014.

7. Recognise EOTAS Packages and the benefit of these for children whom a school setting cannot be found due to complex needs, instead of brushing them off and leaving them to fall further through the cracks, without support.
EOTAS can save lives, and provide education!

This is not a request.
This is a call to action.

Because we are tired of being nice about the neglect.
Tired of being gaslit.
Tired of pretending we’re “fine” while watching our kids deteriorate.

Sahara is clever. She is kind. She is capable.
And she is being let down by your system every single day, in every single way!!

Do better.

Or be ready to answer for what happens when a generation of children are forced to survive in a world that refuses to meet their needs.

Michaela Silsby

Tired, exhausted, not giving up.

Aphantasia
30/07/2025

Aphantasia

Aphantasia: When You Can't Picture It in Your Head
One of the biggest myths about Autistic people is that we all think in pictures. You know the stereotype—Temple Grandin-style, full-colour blueprints and mental movies playing on demand.

Here’s the twist, though: some of us can’t picture anything at all, and may have no sensory memories to accompany images either. That’s called aphantasia, and it’s more common than people realize.
Aphantasia means your mind’s eye is basically a blank screen.

If someone says, “Picture the delicious apple you ate yesterday,” you might know what an apple is, but you won’t see one. Your mind may be completely unable to ‘see ’ pictures, ‘hear’ sounds that happened, or smells from the moment. You might conjure vague bits of floaty, undefined images, but you cannot replay images in your mind or have a sensory memory of the delicious, cold, crunchy Gala apple as if it were a movie. You logically know and can describe the experience, but that is the extent of it.

About 1% to 4% of the population experiences this, and early research suggests it may be even more common in Autistic people. The exact numbers? Still being studied.

This can make everyday tasks more complicated. Following multi-step directions to a new location is tough when you can’t mentally map the route. Planning how to decorate a room? Not easy when you can’t “see” the space. Remembering where you parked? Good luck. Imagining the face of a loved one who’s passed? Often heartbreaking, because it is impossible.

Aphantasia isn’t a disability, and people with it can be incredibly creative dealing with any hurdles it may present. We just find workarounds.

I take photos of where I park. I only buy home décor from places with return policies because I won’t know if the items works until I see it in my home space.

What I 'see' is that it's time to drop the “one-size-fits-all” thinking. Autistic brains are diverse. Some of us think in pictures. Some of us don’t. We all deserve to be understood and to understandourselves.
There is much to learn about aphantasia, and it is all fascinating. Try these links for starters to learn more. I wrote a longer post about it here: https://www.facebook.com/search/top/?q=autism%20goggles%20aphantasia
..and here is an article with a good graphic included:
https://creativerevolution.io/aphantasia-a-blind-minds-eye/

Definitely worth a read:
26/07/2025

Definitely worth a read:

10 Neurodivergent Things That Just Might be TMI

Here are 10 things that might seem unusual from the outside, but make perfect sense when you understand how an Autistic brain may work--mine in particular:

1. Eating the same meal every single day
When I find a food that is predictable in texture, taste, and prep time, I will stick with it like it’s a legally binding agreement. Variety is not exciting to me. Variety is chaos. I do not want a new lunch. I want a cup of the same brand of cold plain yogurt I had yesterday, with a ¼ cup of sliced almonds, 1 cup of blueberries, and eaten in peace. This is not a food rut. This is food joy.

2. Rewatching a series for the third time while pretending I’m open to new recommendations
I already know what happens. I already know how it ends. No unexpected plot twists. No new sensory surprises. No emotional betrayal halfway through Season 2. Just the comfort of familiarity and the ability to quote it word-for-word while folding laundry or spiraling internally. This is not laziness—it is survival.

3. Making detailed to-do lists, then doing none of the things
I love writing a list. Colour-coded, carefully categorized, sometimes even decorated with highlighters. Does this mean I’ll actually do the tasks on it? Not necessarily. For a few glorious minutes, though, my life feels organized. Blissfully under control and doable.

4. Setting five alarms and ignoring all of them like they’re optional notifications
I need time to *emotionally* prepare to be awake. The first alarm is a warning. The second is a request. The third is a negotiation. By the fifth alarm, I might be ready to consider sitting upright. Maybe. If the lights are low and nobody talks to me.

5. Staring at my ringing phone like it just insulted my ancestors
No, I will not answer a call without warning. That’s not communication, it’s an ambush. If you want to talk to me, send a message first like a decent human being. Preferably, a message with empathy and a clear topic of conversation. The—let’s chat!

6. Writing entire essays in my head but forgetting how to speak when someone asks a basic question
I can write a ten-paragraph analysis of my emotional state, but if someone asks me, “How are you doing?” out loud, I might forget all known language and make a noise that sounds like a small animal in distress. Speech is a skill. Writing is my superpower. Choose wisely.

7. Feeling deeply unsettled when plans change, even if the new plan is objectively better
I don’t care if the new plan includes free cheese, free time, or a Cat Stevens private concert. If I mentally rehearsed the original plan, I need a full internal reset before I can accept this unexpected upgrade. The new plan is not *better* — it is *different*, and approached with much caution.

8. Needing the exact right temperature or I literally cannot function
If I’m even slightly too cold, I can’t focus on anything except how much I want to climb inside a heated blanket and disappear. If I’m too hot, I get woozy, and my skin feels prickly as if ants are crawling on me. It is unbearable. I can’t think. I can’t *be*. At night, I have a perfectly engineered sleep system — layers of blankets for pressure and calm, plus air conditioning and a ceiling fan to stop me from melting (down). I agree: I am a climate-sensitive organism with specific environmental requirements.

9. Pacing the room while processing thoughts like I’m rehearsing a TED Talk
Sitting still while trying to think is like trying to swim while holding your breath. Movement helps me access language. Walking helps me access ideas. Pacing with purpose? That’s my creative process. The tiny island in the centre of my small kitchen is my preferred route and has helped to hatch many Facebook posts.

10. Hiding in the bathroom just to regroup during social events
If you think I have a small bladder, I don’t. I can socialize and entertain—and I do—but I have a small social battery. After any get-together, I have a strong need for quiet, calm, and no demands while I recharge my overtaxed nervous system. Don’t worry. I’ll be fine. It is all about the Zen.

These are some of my self-accommodations, my strategies. They all work just fine for me and those who care about me just accept that this is my mom, my wife, my sister, my Nana. What about you? Are there things you do that are perfect for you but get the side-eye from others?

All things Autism and ADHD ❤️💚💜💙💛Toronto Autism GroupAuDHD AdultsAuDHD AdultsAutistic Women Support Group | LGBTQ+ Inclusive | Safe PlaceÂû@followers

🤩
20/07/2025

🤩

EMOTIONAL TETRIS
I try to keep my feelings in order.
So when a new one comes…
I know how to handle it.
But when so many happen at once…
They stop making sense.

Credit: Grant Snider Incidental Comics

Another good visual explanationfrom AJ:
10/07/2025

Another good visual explanationfrom AJ:

25/06/2025
Hot weather
20/06/2025

Hot weather

ADA explained
19/06/2025

ADA explained

Some Autistic people experience sudden, devastating drops into despair, hopelessness and panic with an incredible level of intensity.

While not a formal diagnosis, this experience has come to be known as an Anxious-depressive attacks (ADA), an urgent state of emotional distress that is familiar to many Autistic people.

An ADA, “…mostly begins with an abrupt surge of intense anxiety followed by uninterrupted intrusive thoughts; lasting ruminations about regret or worry produced by violent anxiety, agitation, and loneliness"*

Let me try to describe what an ADA feel like.

Out of nowhere, or after one small thing, you may feel suffocating despair that feels impossible to escape. You're not just anxious—you feel completely hopeless. Some clinicians are now using the term anxious-depressive attack (ADA) to describe this kind of episode. It's not an official diagnosis, but it names something that many Autistic people have experienced: a sudden and intense mental health crash that is characterized by the severe hopelessness, emotional pain, and overwhelming anxiety described.

An ADA usually begins with a deep sense of emotional collapse. From there, intense anxiety sets in. Thoughts become intrusive and nonstop. You may feel panicked, numb, or completely detached. It can be hard to speak, hard to think, and impossible to function. Outwardly, someone might seem quiet or withdrawn, yet internally, they are in distress.

For Autistic people who already experience heightened sensitivity to stress, social rejection, and emotional overload, these attacks can be especially frequent and intense.

Recent research suggests that anxious-depressive attacks may be the link between rejection sensitivity and treatment-resistant depression. Rejection sensitivity can lead to these attacks, and the attacks themselves can make depression worse.

There is also evidence that some brains are simply wired to feel rejection more intensely. That’s not a defect or a flaw—it’s simply a neurological difference. This understanding could lead to treatments that are actually designed for brains like ours. If you’ve had an ADA, or watched someone you care about go through one, you know how real and painful it is. We need more research, better support, and a system that sees what so many of us are actually going through.

I am not a fan of research when it is meant to eradicate autism. I am, however, a fan of research that prioritizes the quality of life for Autistic people. We must find a way to help those who suffer these frightening attacks, and it starts by formally identifying the experience.

If you are a research junkie like I am, or if you just want to read more about this topic, here’s the link to some research. It is also the source for my quote in the post. Fascinating stuff for sure.
https://onlinelibrary.wiley.com/doi/10.1002/npr2.12399

Autistic burnout…
18/06/2025

Autistic burnout…

Autistic burnout is a legitimate and disabling consequence of prolonged stress and overload.

Calling it a weakness of character ignores the reality that it follows relentless pressure to act non-Autistic. This masking of our authentic selves to make others more comfortable and to avoid rejection demands a high toll. The cost is often Autistic burnout.

Autistic burnout is a state of extreme mental, emotional, and physical exhaustion caused by the cumulative effect of trying to function in environments designed for non-Autistic people. It happens when the sensory demands are consistently overwhelming, the social demands too exhausting, the speed and volume of workplace or school expectations are difficult to keep up with, and the pace of our life does not match our ability to cope for any length of time.

Autistic burnout is not a minor temporary setback. It can result in significant loss of functioning, making it hard to clean and organize our environment, engage in self-care, take care of banking, grocery shopping, laundry or managing appointments. It can mean our ability to communicate is reduced, and so it can be even more challenging than usual to ask for help as our daily living demands are left to pile up. We can also experience increased anxiety or depression, feel emotionally flat and be shutdown, be irritable or prone to crying spells, and have a complete absence of motivation.

Preventing Autistic burnout requires intentional planning and support. This may include seeking out then working for employers who are neurodiversity-affirming, who offer flexible hours, remote work options, or at-work communication that can be achieved using email or text. It may also mean requesting workplace accommodations, using the sensory supports you require, and asking for clear expectations.

At home, it may involve reducing responsibilities, finding for help with household tasks, and prioritizing rest. Healthy nutrition, routines, and time with trusted people can also help restore energy and reduce stress. These are essential supports to mental and physical health for Autistic people experiencing burnout. They are not indulgences.

It can take months to recover from Autistic burnout is left too long to fester, so prevention and quick response to its symptoms is critical. Many Autistic people continue to mask or avoid asking for support due to fear of being negatively judged or rejected, or of losing their employment. This makes many of us push through the signs of burnout until we cannot go on. Juggling all of the expectations others have of us—and that we put on ourselves—is not sustainable. If you are doing too much, too fast and in an unaccommodating or hostile environment, Autistic burnout is often the result, and it can lead to an extended time of disability.

If you are experiencing burnout, recognizing the signs and taking the time you need to get better is the very best way to proceed. Your brain and your body need time to recover. Burnout isn’t simply stress. Everything crashes, and to restore yourself, you’ll need time away to give your nervous system a chance to regulate, the anxiety of sensory overload to subside, and your emotional capacity to return. If you delay or deny it, recovery can take a long time, and you may be forced into taking time off by having a breakdown.

If you are pushing through burnout, ask for help and do what you can to take time off. You and your well-being are worth it.

I acknowledge the reality that many Autistic people do not have a support system. Tine off is something they just cannot afford. To sustain themselves, they are forced to continue with their daily demands while in burnout. Our systems of support are doing a terrible job for Autistic people in burnout.

PDA book
11/06/2025

PDA book

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