The voice of autistic children, adolescents and their families is needed now more than ever.
It is the stories and opinions that help change provisions and services. It is the ‘case examples’ that help systems think about what we do and how we can do it differently.
As I see it, collectively the ‘Experts by Experience’ are powerful when you have your say in right forums.
So here’s the point:
NCEPOD is focusing on ‘Transition to Adulthood’ and they need keen candidates to take part.
I am proud to represent my professional body (RCSLT) on the working group.
If you join, your involvement will help shape the study. The study is likely to influence future provision (fingers crossed).
A bit of context if you are interested…
The 2009 Autism Act identifies that there needs to be guidance for services and provision as children move to adult services (section 2.5.d).
The SEND Code of Practice identifies that planning for adulthood should start in year 9 of secondary education.
Yet we know that many autistic adolescents ‘drop off the radar’ in teenage years. Some describe this phase as the ‘shadow years’. It is a time of missed opportunities and the consequences can be severe for some!
If you are interested and want to take part, contact NCEPOD directly on: email@example.com
(NCEPOD stands for: National Confidential Enquiry into Patient Outcome and Death).
I like the simplicity of this image. It would take reams of text to explain these complex concepts, which the illustrator has explained with simple ‘dots and lines’.
In the spirit of this image, I will write no more!
(except to say, I do not know who the illustrator is but that I downloaded it from @WillemKuyken)
These are are the sobering statistics of the relationship between speech, language and communication needs and mental health:
“84% of attendees at psychiatric services had a language impairment and 74% had communication difficulties (including autism). 81% of children with social, emotional and mental health needs have undetected speech, language and communication needs”.
(Royal College of Speech & Language Therapy).
Problems with communication can affect ability to access ‘talking therapies’. I’ve heard of children with mental health problems who have been denied counselling because they have a language disorder (it was assumed they could not engage with therapy because of their communication needs).
Remember that services have a duty to make information accessible (2014 Equality Act and 2016 Accessible Information Stanrdards).
It means that supporting people with speech, language and communication needs to access support for mental health is everybody’s duty. Speech and Language Therapists have a unique role in this but are nevertheless underfunded and underrepresented across all sectors.
From time to time we all need a bit of extra time to make sense of what someone has said. This is known as processing time. Complexity and familiarity tend to make us need more and less time respectively.
Some autistic people need extra time processing information when the information is social or the person has to read between the lines (inference). Some argue they only need extra processing time when they have to make sense of non-autistic people’s style of communication!
I am currently working with an insightful young girl on her making sense of her autism. We were talking about needing extra time to sort out information in her head. She described this extra processing time as her ‘loading dots’.
What a marvellous term and so illustrative of how time is needed to ‘load’ the full picture for what has been said. It also suggests that the ‘picture’ is no less in quality (i.e. it is not about being ‘stupid’ or ‘slow’).
Two communication strategies you can use to reduce the processing time a person needs when you communicate together are:
1. Do not overload with lots of information. Only give one or two ideas at a time. Remember that ‘not responding’ might mean the person is processing what you have said. Don’t go ruining a perfectly good line of thinking by interjecting or adding additional information.
2. Be specific about what you mean by what you say. Use less of the inferential, floral language that helps some but rarely autistic people.
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.
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.
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).