The Blog

Congratulations! You’re Autistic! Now What?

autisticnottingham

Congratulations! You’re autistic!
Now what?

Overview

What does this mean for me? -3
Meltdowns, Shutdowns, Burnouts -6
Social Communication -8
Sensory Sensitivities and Stimming -10
Camouflage & un-masking -13
Mental health -19
Physical health -20
Relationships -21
Workplace Support -22
Personal Support -23

What does this mean for me?

Receiving a diagnosis of autism later in life can be a strange and stressful experience.

However, it can also be a relieving experience. Many people diagnosed as autistic as adults believed that they were “wrong” or “bad” in some way – you are neither wrong nor bad, you are autistic. It can bring a sense of relief to have an explanation for why you may have felt different, and to realise that there are others like you, and that you are not alone.

You might experience a long process of acceptance of your diagnosis.

It’s okay to not know how to begin processing this news. It’s okay if you feel numb to it. This is a normal and natural response to the shock of this change.

You might have a lot of confusing and conflicting emotions. You might go on an entire journey of changing emotions, which can be stressful. This is normal, and it will pass.
Shock. “There must be some mistake. This can’t be true.”
Denial. “I’m not autistic – I’ve seen on TV what autism is, and I’m not like that.”
Anger. “Why? Why me? Don’t I have it hard enough as it is?”
“Why wasn’t I diagnosed as a child?! Why was I left to struggle alone?”
Powerlessness. “What does this mean? Does it change me? Does it define me?”
Depression. “This is it for me. I’m always going to feel different. I’m always going to struggle with X.”

Shame. “I wish I wasn’t different, I wish people wouldn’t look at me like they know, I wish no-one knew and I could just pretend otherwise.”
“God, why can’t I just cope like everyone else? Why am I so incapable of dealing with daily life? Everyone else manages!”
Fear. “This is it for me. I’m never going to reach my goals. People are going to know I’m autistic and they’re going to treat me even more differently to how I already feel.”
Isolation. “No one understands what I’m going through with this. I’m not able to talk with anyone, because they’ve never had to go through what I’m going through right now.”
Hope. “I can cope with this. I’ve been through harder times. Nothing is really different – it’s just new knowledge.”
Acceptance. “It’s okay. I’m still the same person. I just understand myself more now. I can use this knowledge to move forwards and grow.”

Meltdowns, Shutdowns, and Burnouts.
Meltdowns are similar to a “fight or flight” response to an overwhelming situation. They are an uncontrollable, external reaction, and may involve screaming, crying, hitting out, throwing objects.
“It feels like dropping a watermelon on the pavement on a hot summer day. The bobble, the slip, the momentary suspension of time just before the hard rind ruptures and spills its fruit, sad and messy, suddenly unpalatable. And no one knows whether to clean it up or just walk around it.” – Musings of an Aspie, Anatomy of a Meltdown.
Shutdowns are an internal overwhelm response. They are also an uncontrollable reaction, and require time, space, and safety to come through. They may include becoming non-verbal, being unable to process any more stimuli, curling into a ball, and drowsiness.

Meltdowns, Shutdowns, and Burnouts

While a meltdown or shutdown is more of a short-term process, which is typically recovered from in a matter of days, burnout is a result of chronic cumulative stress of navigating a world desgined for allistic people.

Burnout refers to an intense physical, mental, and/or emotional exhaustion, and sometimes leads to hospitalisation. Suffering a burnout is one of the primary reasons people are diagnosed in adulthood.
“”A state of pervasive exhaustion, loss of function, increase in autistic traits, and withdrawal from life that results from continuously expending more resources than one has coping with activities and environments ill-suited to one’s abilities and needs.”” – Dr. Dora Raymaker

Social Communication as an autist

You’ve probably had difficulties with socialisation and communication in the past. This is because autistic people and allistic (not autistic) people use different types of social communication. You might have found yourself being the last to “get” a joke, or with people getting upset at you for reasons you can’t understand, or being socially ostracised.

Allistic people tend to use social rules and expectations which are tatic to them, and which creates layers of implicit meaning.

Autistic people tend to use language which is direct and to the point.

That’s okay; we’re all different and we all work in different ways. But this means that miscommunication often happens between autistic and allistic people, because they communicate in different ways with different goals. Often, autistic people struggle to understand allistic people, and equally, allistic people struggle to understand autistic people.

Social Communication as an autist

The miscommunications which occur between autistic and allistic people is often referred to as the “double empathy problem”.

This means that many autists find communicating with other autists more comfortable, easier, and less anxiety inducing than communicating with allistics. If you’ve not been comfortable with socialisation in the past, try meeting some other autistic adults – you might find you enjoy yourself a lot more!

Sensory Sensitivities

We have 7 senses. 98% of autists are hyper- (extra) or hypo- (less) sensitive to stimuli in at least one sense. If we are hyper-sensitive, we experience stimuli quite intensely, and engage in behaviours to reduce the overwhelming stimuli. If we are hypo-sensitive, we experience stimuli in muted ways, and engage in behaviours to increase the muted stimuli.

Visual (sight)

Gustatory (taste)

Auditory (hearing)

Olfactory (smell)

Tactile (touch)

Proprioception (sense of body position)

Vestibular (sense of balance and movement)

Any of these senses can be processed differently! You might engage in behaviours to reduce or increase stimuli. There are so many different ways to do this. The next slide will outline one example behaviour for each sense.

Increase stimuli: Decrease stimuli:
Visual: Seeking visually complex stimuli; wearing sunglasses
Gustatory: Enjoys strong or spicy foods; only eat “safe” food
Auditory: Enjoying loud or heavy music; wearing noise cancelling headphones
Olfactory: Seek specific smells e.g. using oils; Avoiding certain situations e.g. cooking, public toilets
Tactile: Seeking pressure on body; only wearing certain types of clothing
Proprioception: Foot tapping, tiptoeing; Seeking deep, even pressure on the body
Vestibular: Enjoying sport, especially with lots of movement; Avoidance of movement, e.g. elevators, biking
There are so many different ways off seeking to increase or decrease stimuli! These are just examples, and you may experience sensation in different ways to what is listed here.

Stimming

“Stimming” is a self-stimulatory behaviour. These are usually repetitive, and provide controllable sensory input, which can be calming when uncontrollable sensory input or emotion becomes overwhelming.

This includes any behaviour which provides that function. Any behaviour which seeks to sooth you, which is a controllable repetitive form of stimulation, is a “stim”.

This includes, but is not limited to:

Flapping. Rocking. Spinning. Jumping. Tapping. Chewing (gum, pens, inside of mouth). Teeth grinding. Humming. Whistling. Listening to repetitive audio (white noise, one “safe” song/album on loop). Vocalisations. Nail biting. Rearranging or organising objects. Echolalia.

Should I suppress my stimming?

No! Stimming is a natural part of autistic body language. It helps us to express emotion and helps us to control sensory input.

If your stimming involves harming yourself or others (for example, hitting), then there are ways to replace this with a less harmful stim.

Camouflaging. (what on earth does that mean?)

When you’re diagnosed as autistic as an adult, it’s usually not the first time that you’ve felt “different” or “othered” in some way. In fact, most adulthood diagnoses come after you’ve had a major “burnout”, “meltdown”, or “shutdown”. This might have looked like a bout of major anxiety, depression, rage, or apathy. You might have been hospitalised; perhaps this is where the diagnosis happened. This is okay, and it’s not a reason for shame.

When we are autistic but don’t realise it, we can feel different. Some people describe feeling like an alien placed on Earth and expected to cope. They don’t really understand why they can’t cope with things that other people can cope with, like complex noise or socialisation. They feel like these are things they are supposed to be able to cope with, and so they “camouflage” their difficulties.

Masking

“Masking” is a form of camouflage, which refers to the conscious or unconscious act of emulating neurotypicality.

Masking hides ones autism, instead presenting a neurotypical mask. Suppressing autism is a natural response to a world which isn’t well adapted for autistic people. Masking is utilised to avoid ostracisation, rejection, to maintain careers and relationships, for a whole variety of reasons. It’s not always a conscious decision; masking can become second nature.

For example:

Repressing “stims”. Practicing engaging in small talk. Preparing topics to talk about. Forcing yourself to make eye contact. Imitating body language/facial expressions.

Masking

It was a double-edged sword. On the one hand, I was no longer being actively verbally abused and shunned, on the other, I was being “accepted” because I had learned to be in stealth.

It was like there were two of me. The real Jaime who hid in the shadows and the actress who stood in the spotlight. I would nod and smile in the right places, stop talking if the energy in the room got uncomfortable, discuss politics, news, reality shows, and dinner. (Dinner seemed to be a very important subject to discuss at work during lunchtime!) Also, the weather. You could never go wrong talking about the weather.

Over time, my emulations became a part of who I was as a person. No longer did I have to force my face, body, and voice to behave in neurotypical ways because it was like I had learned a foreign language and could speak it fluently.

The Painfully High Price of Autistic Masking – Part 1

Jaime A. Heidel – The Articulate Autistic. April 23, 2019

Un-masking

However, suppressing autism in this way is emotionally, psychological, and physically draining. Camouflaging, including masking, is associated with higher levels of lifetime suicidality (Cassidy et al, 2019).

The way that you are as an autistic person is your natural way of being, and suppressing who you really are is so tiring. It might not be something you’re doing consciously. It might have been so many years that you’re not even sure who you are under the mask anymore.
Un-masking can be a long process. It can be intimidating and confusing. But being your true autistic self has positive effects on self-esteem, anxiety, and depression.

Un-masking (how do I even start?)

Your true autistic self is wonderful and worthy. It can take time to get to know who you really are, especially after numberous years of hiding.

Here is a place to start, from autistic blogger Ella Tabb.

Unmasking.
It is too simplistic to ask autistic people to just stop masking. Most people mask subconsciously, and may not be aware of who they are and how they want to behave once that mask is removed.
Unmasking is a process. I started this process by firstly making an honest list of my genuine likes and dislikes. This meant throwing out the “should want to do” activities such as parties, shopping, and spas, which I have always sone because I thought I should. Instead I embrace my real passions of Lego, board games, and baking.
I have also started spending small periods of time trying to instinctively find my autistic self. Right now I’m doing this just at home, but long term I hope to unmask more often. So I stim, and respect my need for silence something. I behave in the ways which as a teenager and young adult society told me were weird, and I’m comfortable with it. The more I unmake the better my mental health.

Un-masking (how do I even start?)

She mentions something very important: no longer thinking about “what I should enjoy”, and instead thinking about what you actually enjoy, regardless of what other people think about it. Many autists will have been made to feel ashamed about their interests, for being “odd”, or “age inappopriate” – now is the time to disregard those voice, and do what makes you happy. This is your life, and you deserve to spend your time and energy on activities you actually enjoy.

Un-masking is also about accepting your personal limits, and not the limits society dictates. Perhaps you aren’t able to work full time, or at all. Perhaps you need a nap after leaving the house. Perhaps when you’re stressed out, you only want to eat noodles with butter.

This is okay.

No-one knows your needs better than you do.

Mental Health.

Autistic people frequently have co-occuring mental health problems. There are a variety of reasons for this, but it means it’s important to keep an eye on your mental wellbeing! If you are struggling, it is okay to reach out. We all struggle sometimes – it’s nothing to be ashamed of.

Commonly co-occuring mental health issues include:

Schizophrenia Spectrum Disorders

Anxiety disorder (general/social)

Depression (unipolar/bipolar)

Obsessive Compulsive Disorder

Eating Disorders

Insomnias

If you struggle with overwhelming thoughts or feelings, then you should talk to a medical professional about this.

Autistic people respond to different types of therapy than allistic people. This is important to keep in mind when finding a therapist. One who is autistic themselves is the best bet.

Physical Health:

There are a number of physical conditions which are experienced frequently by autistic people. This doesn’t mean that autism causes these conditions, but they co-occur for a variety of reasons.

Common physical conditions include:

Immune disorders including allergies and asthma

Ehlers-Danlos syndromes (inc. hypermobile joints, stretchy, fragile skin)

Gastrointestinal disorders (inc. constipation/diarrhoea, IBS, acid reflux, indigestion, stomach ulcers)

Relationships:

Autistic people can and do have healthy, warm, and loving relationships. However, due to the communication differences between autistic and allistic people, autistic people can be vulnerable to social manipulation.

In social relationships, it’s important to understand your own wants and needs, so that you can put in place clear boundaries. Boundaries protect you in relationships by dictating what is and is not okay. Your time and energy is important, and it is okay to dictate what uses them!

Genuine friends treat one another with trust, respect, understanding, and kindness.

Around a genuine friend, you feel safe and able to be yourself.

Am I entitled to workplace support?

Yes.

The Equality Act (2010) requires employers to make “Reasonable Adjustments” to support you in accessing the workplace.

This can be physical changes, such as provision of noise cancelling headphones, desk partitions, and low intensity lighting.
This also includes non-physical changes, such as workplace training into ASC for employees/employers, and policies/procedures to ensure that the workplace social dynamic is inclusive of people with neurodiversities.

Am I entitled to personal support?

Potentially.

Adult Social Care Services can provide a Care Assessment to assess whether you would benefit from support in your personal life.

You may then be provided with a budget to be used on support from a Personal Assistant service. A PA can support you with a range of activities, including completing domestic tasks such as washing dishes and laundry, and accessing the community such as for shopping, social activities, or medical appointments.

Congratulations! You’re autistic!

You’re wonderful, and there’s a whole community of us just waiting to welcome you.

References:

, , , ,

Leave a Reply

%d