𝐃𝐎 𝐍𝐎𝐓 𝐤𝐧𝐨𝐜𝐤 𝐨𝐧 𝐭𝐡𝐞 𝐝𝐨𝐨𝐫

You will find this notice on my door (see photo attached). This might seem odd, and you might be wondering WTH… Let me paint a picture and you’ll understand.

Afiyah is calm and playing with her oats. There’s a knock on the door. Now Afiyah thinks it’s food delivery. You see, ages ago, we used to order takeaway every Friday and with a doorbell and a knock on the door, I used to receive the yummy meal that Afiyah loved. We don’t do this anymore because firstly it’s too expensive and secondly, we are trying to eat healthy.

But the association between the knock on the door and takeaway is engraved in Afiyah’s mind because she LOVES food. When I say she loves food, I mean another level of love for food. To be fair to Afiyah, most autistic people are driven by food and that’s part of their sensory needs too.

Therefore, knock on the door = food delivery (in Afiyah’s mind). But there was no food and instead, it was a parcel. Now Afiyah is upset that there was no food, she starts by making unhappy sounds, then hitting her head, biting her wrist and then before we know she’s vigorously banging her head on the wall.

At this moment, nothing was going to calm her down as she was expecting a takeaway which wasn’t there. So, she carries on with her self-harming behaviour. During this process, I’m trying to hold cushions in between Afiyah’s head and the wall whilst keeping a safe distance so that she doesn’t hurt me accidentally. I am also trying to direct her to the padded room without any physical intervention (I never use physical intervention).

After several minutes, she now finally appears calm. I would like to emphasise on ‘appear’. With any behavioural crisis, there is an adrenaline rush and sometimes it takes up to 90 minutes for adrenaline to leave our body (this is backed up by research). So even if Afiyah appears to be calm, she’s still not reached her baseline because of adrenaline.

Now whilst she ‘appears’ to be calm, she starts focussing on the injuries she has caused during the crisis earlier. Most of the time it’s the bite marks on her wrists. Even if the skin is not broken, Afiyah will now start picking her skin and cause a wound - her pain threshold is high, and this meets her sensory needs too.

More than half of autistic people experience anxiety regularly (research-based fact). So, picking her skin also serves her anxiety and her underlying anxiety was escalated by the knock on the door. Over the next few days, Afiyah carries on being anxious, more rigid, displays more behaviour and picks her skin more. Now her tiny wound has become bigger and infected because she can’t leave it alone and neither would she leave any creams on it. Since her wound is now infected, she’s going to need antibiotics and her behaviour carries on spiralling because now she’s entered a negative spiral of behaviour, and this has become a learned behaviour as well.

All of this was just because someone didn’t follow the instructions on my front door saying "DO NOT knock on the door".

Knock on the door => Afiyah’s anxiety => self-harming behaviour => more anxiety => wound => infection => antibiotics => more behaviour => learned behaviour => negative spiral lasting for weeks after the “knock on the door”.

It’s not just a knock on the door, it’s a vicious cycle of negative behaviours and injuries for the autistic person and a lot of grief for the caregiver - all of this is avoidable if people pay attention and care to follow simple instructions.

So, when a parent/carer tells you to avoid certain things for their autistic child, you listen to them without any doubts. If you have questions, find a suitable time to ask and understand the reason.

Also, know that the mum hasn’t created this behaviour in the autistic person. The mum isn’t being bossy, fussy, paranoid, or crazy but she’s trying to avoid a chain reaction of negative behaviours caused by one action of an arrogant person who didn’t care to follow instructions.

And neither is the autistic person being fussy or paranoid, it’s just their brains are wired differently to others and each autistic person will have different triggers. ‘Knock on the door’ is an environmental trigger which certainly can be avoided.

A lot of people tell me that I shouldn’t be leading such a rigid life because of Afiyah and their suggestion is to send Afiyah into full-time residential care. There are so many things wrong with this comment.

This comment is extremely offensive to the parent, and this doesn’t solve anything but will only cause more grief and distress to the caregiver because the answer should be your empathy and understanding. I understand you may be saying this out of concern but how you say it and when you say it makes a huge difference too. Find a good time to bring this topic and if you think there isn’t such a thing as a ‘good time’ then don’t say it at all. Let the parent come to this conclusion by themselves and when they do, you can be there to support their decision.

Since we all know funding plays a HUGE part for anyone in care, it’s not as simple as just phoning the council to come and pick up my child to put them in care. Council isn’t going to fund care for any child unless that’s the last resort. So those who think I can just phone the council and ask them to pick up Afiyah and take her into full-time care, let me tell you again, it doesn’t work like that. This time, please believe me instead of saying “irrational, paranoid, fussy and crazy” again.

Every parent is fully aware that one day, their disabled child is going to be in full-time care. We know that day may come sooner than we want but as parents/carers, we will always put our children’s best interest at the centre of every decision.

After reading this, I hope you understand the depth of any instructions/requests a parent/carer is making to keep things as calm as possible for their autistic children.

If you have any questions, please get in touch, I’ll be more than happy to explain further. Stay blessed everyone.