Tag: mental-health

Scared …

Standing while a loved one shouts and screams at you, occasionally lashing out and hitting you. Such a force of rage, brewed up in an instant, and you are the target for all that venom.

What do you do?

You try to offer a word of defence or challenge their point of view, and the effect is like pouring water on a fire of oil. The rage erupts into greater ferocity, eyes straining in their sockets, bloodshot from the strains of anger and hatred.

What do you do?

You try to hold the flaying arms as they continually lash out at you, but your touch is reacted to as if you have seared their arms with branding irons. The rage erupts yet further.

What do you do? …

Answer = Remain Calm …

Experience has taught me. This reaction is passing. In time, it may not even be remembered. It is not personal. It is just a reaction to a situation. I aim to understand what that situation was. It could be that a spoken word has caused confusion, and his autistic mind cannot process what that word means. Panic has therefore set in. Fight or flight has set in. It could be that a smell, or a sound, or even the sensation of touch, or taste, has given rise to a hypersensitivity overload which triggers a need to defend against.

Can you stand in the face of that outrage and aggression? Ensure that he is (s)afe and can do no harm to himself. Reduce the level of stimulation from all sources. Can you ensure you are aware that you are intervening on behalf of a terrified person who needs your help and understanding? Can you remain (c)alm in the face of this attack? Can you find a way to empathise with this person, speaking softly and understandingly? (A)ffirm that you hear what they are saying, even if you disagree. Can you understand their requirement for (r)outine and guide them towards those familiar and safe places and activities? Through the ongoing rage, can you find a way to (e)mpathise with them? Demonstrating you’re in support and not in conflict with them. Have you understood yet what triggered this rage in the first place? An understanding that will help you (d)evelop a plan to prevent it next time.

Would you be able to understand that the person in front of you with such aggression and anger is SCARED? And needs your help.

You want to hug them, but can’t, as the sensation of being held at that moment would aggravate their sensitivities. Feelings of being trapped and constrained. You want to look them in the eye, but eye contact would be seen as threatening. You must guide them from a distance and stand with them until they calm down. When they do, then you can reach out and hold them. Comforting them as you always have and demonstrating your unconditional love for them.

Do you understand the difference between a meltdown and a tantrum?

Pond in pots …

Apprehension and fear of the unknown are very real for a person living with autism. Often, they rely on strict routines and need to understand exactly what is happening or going to happen. Failure to grasp this can lead to their increased anxiety, and because of delayed processing abilities, attempting to comprehend these changes quickly—which are typical of the condition—can result in a cognitive meltdown. This meltdown may leave deeply embedded fears that resurface whenever anything similar occurs.

            I learnt this lesson when I tried to include our son, Marc, in creating a pond in a pot for him to look out upon from his favourite window. I encouraged him to fill the pot with rainwater from the water butt. He eagerly grasped the watering can and filled it, covering everything and everyone else as he did!

Then I asked him to place a couple of bricks into the pot, onto which we would stand the plants. He froze. What I had not realised was that the water he had just filled now reflected the sky and the surrounding scene like a mirror, and he could not see into the pot. Filled with fear of what was now hidden from him, he would do nothing else until I placed the first brick into the water, and my doing so broke the reflection on the water, and he could once again see into the pot.

           Calmed by this simple act, Marc continued to help me create his pot, happy that there were no hidden terrors. No meltdown, but an absolute lesson in understanding how autism can impact a person through everyday activities.

I have written about this example of supporting our son who has autism, among other conditions, and explain various interventions in my debut memoir, Marc’s Garden.

Setbacks …

In November of last year, I took Marc to hospital on three consecutive days during a time when he had a 48-hour EEG. We had to wait until this week before his neurologist met with us to give us feedback and agree a future plan of action.

We arrived and entered the consultation only to be told, “The EEG had not been sent to the appropriate department to report on!”

Oh my word! Why does life have to be so challenging, and supporting our son be so difficult. It was escalated and “in due course” we will get a letter, but the opportunity to discuss any changes was lost.

I became more irritated when the neurologist, a specialist in epilepsy, suggested that some of Marc’s traits may not be epilepsy related.

“What? How can you say that?”

I was told that from what the neurologist had seen from the EEG – even though it had not been analysed – there was no recorded abnormal electrical activity in his brain at the time.

Even I know that an EEG only traces activity on the surface of the brain, and not deep within the brain. That requires a different more intrusive test. I also know that a standard EEG will often not pick up certain seizures such a Absences or activity from the Hypothalamus.

I know what our son is going through every day and what we need to do to support him. I also know what previous neurologist have told us and do not know why that knowledge and the detailed records that I keep is just being dismissed.

A case of ‘Computer says No and so its dismissed’ if ever I heard it.

Why does it need to be such a battle?

I have demanded a second opinion and raised my dissatisfaction at such a delay in the EEG being properly reported on, as you would imagine.

World Autism Acceptance Week 2nd – 8th April 2024

“Share, connect and engage with supporters to help increase autism acceptance and awareness. Join the online conversation.” National Autistic Society

This week, there is a focus on fundraising to raise vital funds and help create a society that works for autistic people. That much is true, but in my experience, the focus this week and every week needs to be on creating awareness of what autism is, how it affects the individual with the condition, and how it impacts those around them.

There remains a widespread media focus on the high-functioning end of the autism spectrum, with individuals explaining how they navigate the world, their relationships, their attention to detail and how they work with their condition. 

There remains an absence of media coverage of the more severe aspect of the spectrum. An estimated 60% of individuals with autism are imprisoned or in trouble with the police, not through anything done wrong but more a misunderstanding of words used: Echolalia, sensory-triggered meltdowns, and a lack of social interaction skills.

Similar aspects of autism lead to isolation, depression, and anxiety—a sense of futility and worthlessness. A person with autism, suffering from sensory overload, cannot walk the length of a shopping mall without either curling up in a corner somewhere, trying desperately to hide from all the stimuli or falling into a rage triggered in defence of the sensory attack.

A person at this end of the autism spectrum can suck the life and optimism out of their souls and that of those who are around them and fall into a spiral of misery akin to Dante’s Inferno.

Awareness and understanding of these conditions can help people recover their minds and well-being and bring peace to their world.