Help/Advice on Comms with 4 year old Non-Verbal Autistic Child

Hi

New to this and just looking for some advice/help on how to help a 4 year old who is non-verbal and has alot of meltdowns frequently throughout the day to communicate. 

By way of background, the child did used to communicate better and say the odd words and had better focus on playing games etc then but as they’ve gotten older, have gotten worse and almost at zero communication. Feels like dealing with an 1 year old. Other than there is physical communication such as passing a bottle for a drink etc. We’ve been told they may have ADHD and there seems to be a huge oral need to bite/chew everything.

The meltdowns are catastrophic with a lot of self hitting such as bashing their own head with their hands or on the floor, or wanting to bite others, loud screaming and brought on randomly. No sensory toys seem them to calm them down whatsoever.

Weve tried communication cards which have done nothing except become a chew toy, audio learning books, sensory books/toys, sensory tent which they don’t want to go into. Nothing seems to help and the child doesn’t focus on any of it and we understand the meltdowns may be coming from sensory overload so desperately want them to be able to express themselves. It breaks our hearts on a daily basis and causes a lot of stress for the entire household and the child’s siblings. 

Has anyone been through the same struggles and has any tips on how to help them communicate? Will literally try/buy anything to help! Appreciate every child is different and has their own needs. But hopeful for some help anyway. 

Thanks so much :) 

  • Have you tried Makaton signing? It's basically what Mr Tumble uses (don't know if that's still a thing for young children). We used this for my son that had limited verbal communication. The goal isn't to end up talking eventually (although that did happen with my son. He's 19 now and I never thought he'd be able to communicate). The goal is to communicate in whatever way your child can. Makaton is much more logical than other sign languages and uses symbols and spoken word too.

    https://en.m.wikipedia.org/wiki/Makaton

    We found that my son's meltdowns reduced dramatically when he could communicate his needs. We started with "want" as the goal verb to learn. His motivator was raisins. He used to take me by the hand to the cupboard where the raisins were and use my hand to point for them. So we learnt the signing for "want raisins please". He picked this up within days. For the example you gave, when your child passes you the bottle you would act a bit ignorant with the attitude of not knowing what that means, then say very simply "want drink?" with the two signs for want and drink. Keep doing this. If your child gets frustrated, get the drink but keep signing want and drink. When you pass the drink reinforce the signing by saying "drink" and signing at the same time. Once that's mastered you can increase vocabulary gradually so it becomes "want drink please" then you get the drink, sign "drink", and then "thank you ". You have to really reduce the demands by speaking too much and overwhelming a child that is struggling this way. Keep it very simple and see if the reduced demands improve their ability to communicate in a way they can. 

    Here's the Makaton website:

    https://makaton.org/

    You haven't said if your child is receiving speech and language therapy. With the difficulties the lack of communication is causing that you described your child should qualify. 

  • Hello 

    I would try vocalising the emotions and talking about the issue. The frustration is often not being able to find the language and feeling understood helps. I read a helpful book that suggested naming the emotions and rather than just glossing over them or trying to change the subject instead acknowledging them and talking about them and the situation and being calm but allowing them to feel what they feel in order to soothe. The idea is in doing this you teach both the language to express and the self-talk to help the child learn to calm themselves. 
    My husband at first thought I was mad for “making a deal” out of whatever it was but now credits this for the happiness of our little one. 
    Other things that can help are holding and stroking their hand lightly while doing this. 
    I would also encourage going to a speech and language therapist and I would try to learn some baby sign. You could start with Ms Rachel (song for littles) on YouTube to see if your little one responds to sign and if they do you can do a course. 
    Sorry if any of this is patronising / has already been done! 

  • Thanks so much for all of that information, help and advice, much appreciated :) xx

  • I'm sorry you're going through this. A few things tho - the need to chew isn't a hard sign of ADHD and can be very typical for many autistics. But issues with verbal language is a key to understanding autism. What appears externally as a regression can often be a symptom of 'growth' - becoming more conscious of the world around, learning to deal with more things, growing other mental capacities, and it can also be a sign of being overwhelmed. 

    I still have trouble recalling a word which sums up an extraordinary amount of thoughts - this was incredibly frustrating when younger. In fact, I recall not having the terms for a great many things in my 20s and just breaking down in to tears out of the ability to see or sense a thing and not be able to describe it. Suddenly being in a very cruel world and ill-equipped. I still have trouble more often when I've been deeply immersed in heavy right-brain activity. This fits into theories of lateralisation of the brain. However, there is already a loss in translation between Autistic and Non-Autistic, which makes communication with language difficult to begin, not just from how I naturally express, but in my ability to understand others unless they're much more precise with vocabulary rather than "symbolic".

    Having a wild imagination and an internal vivid understanding of a thing which I cannot help you see, and therefore feeling isolated with these thoughts can also compound the frustration. Especially when dealing with matters of injustice -when young, what may seem like a minor unfairness, can be a looming monster.

    Communication can be expressed in many ways and here is where the theatre can be useful. Mime, movement for expression and dance can be useful. picture book encyclopaedias, drawing, painting, building. But some things just come with age. I remember around 40 feeling Absolute Relief from finally starting to grasp the vocabulary to identify why the social world around me operated in ways it did, thanks to years of reading philosophers, psychologists and sociologists. Some things simple come with education.

    Sorry - I'm trying to state there is more than one thing that will create overwhelm. And when stressed, it can further arrest the ability to access vocabulary and speak. 

    One of the most difficult things many of us encounter is being interrupted. Whether exploring in our imagination or an external object. All autistic play is an exploration and we tend to think deep (slow thinking rather than fast thinking, if you're familiar with these terms), so interruptions can be like waking a sleepwalker. It's painful. And they can come in many forms: losing an object stops a flow. Demanding attention without transition time, cutting short a thing we're engaged in. Changing plans when we had a set imagined day. Turning off the tele mid show, the radio mid song. not allowing a thing to run its course. And even wanting to play along with family but suddenly I can't access the words and the moment is past.

    You seem to be aware of the other- external sense perception. We cannot "just dull" our senses like our peers. Artificial lights can give us immediate migraines (lightaware.org), sound and constant noise can be torture. I would simply suggest to buy a decibel reader (even an app) and see what signals it's picking up and possible delegate quiet time. Clothing made from polyesters/nylon (micro-plastic thread) is a byproduct of petroleum and one can feel suffocated in plastic. Food sensitivities: many of us have found FODMAP diet works. My son would have severe meltdowns when young if he had chocolate - the same kind you describe here. It was the only time it would happen. I managed to notice the pattern (cause and effect) really quickly because they were sudden and unusual. 

    I'd suggest to always reinforce one thing at a time to completion. Help protect the Childs time to explore and time to transition. At the end of the day as children we often just want to feel connected and protected. But also I might suggest to make notes of everything prior to the Childs responding this way to find the cause.

    As for the chewing, all my brothers and my father chew ice. 

    Just some ideas to explore. It's heartbreaking to see them like this, though. x