Subjectivity of need

Severity of autism

The severity of autism cannot be quantified easily. Some autistic people who communicate using words are considered to have mild autism whereas those with non-verbal autism are seen to be severe.

I have meet very intelligent and eloquent autistic people who are severely debilitated by anxiety and problems with independent living. In contrast, I’ve met people with learning disabilities who have an enviable life because they are well cared for by people who understand and appreciate their differences.
How severely someone is affected by autism can vary depending on where they are, who they are with and what demands are placed on them.

So if we should want to quantify severity of autism; the person living it should be the judge of how severe they think it is, not professionals, teachers or commissioners.

Disorder or a matter of difference?

The only time “disorder” is really needed to talk about autism, is at the during a diagnostic assessment (in order to meet clinical diagnostic criteria). At any other point we need to think in terms of “difference” and “opportunities”. 

From a communication perspective:

The diagnostic pointer of “repetitive and stereotyped speech” during diagnostic assessments becomes attempts at engaging in conversation using known information in everyday life. It is different from what might be socially expected but we should look at the intention (engaging in conversation? seeking reassurance? or speaking about something enjoyable to self?). 
The opportunities lie in supporting the person to develop more language for conversation and participating in interactions where needs can be met and conversation can be enjoyable and effective for both.

Slow progress is better than no progress

We are likely to be socially isolated for quite a while. I’m shamelessly using Charlie the TheraTort to illustrate that we need to pace ourselves. Routine and maintaining positive relationships at home is vital. So don’t feel under too much pressure to have a ‘whizz bang’ home education programme sorted. 

Learning is more than just education…

Are You Alright ?

A thought on emotional communication: We tell each other and our kids to let us know if they struggle or they have a problem. Hence if nothing is said, it is assumed everything is fine. Right? 

One of the topics I frequently talk about is the developmental steps involved in ‘letting someone know’ if there is a problem. 

Here’s the ‘potted version’:

Before anything can be said, the person needs to know something does not feel right. 

They then need to work out where the ‘not right’ is located (within or outside of the self) and what it is. This is also known as interoception.

Next comes the social communication bit about alerting the right person who understands and responds to you. 

After this step comes communication in any shape or form. But let’s face it, if you use behaviours that challenge, it makes it a lot harder to get the help that is needed.

Assuming you have got this far, that initial ‘letting someone know’ may require additional follow up communication and the process starts up again. 

So here’s the thing that so many autistic people and their families know: Sometimes it is easier not to communicate that something is not right. And sometimes the person just hasn’t noticed something is not right. They may only notice when it is too late or on seeing you at home time, it triggers the “I am definitely not right!” response. 

‘Not right’ then becomes a meltdown in public (if we are lucky) or internalised (in a worst case scenario).