Autism & transition to adult services

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: transition@ncepod.org.uk


(NCEPOD stands for: National Confidential Enquiry into Patient Outcome and Death).

Isn’t that just their autism?

Diagnostic overshadowing

‘Diagnostic overshadowing’ happens when professionals and practitioners focus on the person’s disability and fail to explore anything else that can help us understand what goes on for the person. 

When diagnostic overshadowing occurs for autistic people; mental and physical health problems, sensory pain, language and communication problems, and social discrimination are attributed to autism only. I have been to SEND tribunals where this comment was made:

 “…isn’t that just not their autism?!”

(in case you are curious my response was: “no, it is additional communication needs and it affects their mental health and access to education). 

Diagnostic overshadowing is dangerous when everybody lacks any curiosity about what is going on for the person. This is also known as ‘therapeutic disdain’.

When we see autism only (and forget that there is more to all of us than one defining characteristic), we forget to ask ourselves and the person:

Are you in pain?, are you being bullied?,  is your sensory environment just too much?, are you confused about x?. 

The comment: “isn’t that just their autism?” is dangerous because it assumes autism is status quo. It assumes nothing can be done to enable the person to communicate, learn and relate in a way that is meaningful and useful to them.

The comment: “isn’t it just their autism?!” is the reason why it is argued that person centred and specialist speech & language therapy is not necessary for autistic children or that a child with communication problems cannot access counselling. 

If we don’t challenge this statement (or any other statement that indicates ‘diagnostic overshadowing’); the risk is that we remove hope (and support) that the person can develop and thrive in their own way. 

It is lazy thinking at best and harmful neglect at worst.

We need a little more clarity… honesty even!

Title of post

The second paragraph of every single independent speech, language and communication report I write includes a ‘statement of truth’.

Every independent professional will include a ‘statement of truth’ in their reports.

Essentially, the ‘statement of truth’ is my promise that I write about the child’s communication needs to help the special educational needs & disability process. It is also a promise that I will not be unduly influenced by whoever pays for the report (i.e. the child’s parents).

I write about the person and their communication needs. I think carefully about what support the person needs to learn, thrive, and function socially, emotionally and communicatively. I base my recommendations on evidence I gather about the person and the evidence base developed by my profession. I try to be fair on services in my opinions.

Most independent practitioners take the ‘statement of truth‘ very seriously because clinical impartiality is a the core of our reputation.

However….

Evidence from independent practitioners is generally initially dismissed by Local Authorities because it is paid for by families. The underlying message is that evidence is wrongly influenced by the child’s parents, no matter how good and accurate it is. Eventually it gets included but it is an unnecessary battle.

Evidence is scrutinised by administrators who generally have little practical experience of what it is about so the likelihood of understanding the content is reduced. Some of the evidence is complex stuff so why would they necessarily understand? When the content is not understood, vital information is missed out in Education, Health and Care Plans.

Here’s the irony:

Evidence produced by local authority and NHS professionals DOES NOT include a statement of truth.

Most public sector employees have a duty to deliver care, free at the point of access. Services are underfunded so any therapy has to be shared between as many people as possible. As there is not enough to go around, only children who are most at risk can access help (also known as prioritisation).

The reports I have read from most professions are brief and focus on the child’s needs in relation to what is available from public service. My interpretation is that their evidence is influenced by ‘who has paid for the report’ (i.e. Local Authority or NHS). These reports are often used as evidence of need rather than evidence of service availability. We are talking about two very separate matters!

So here’s an idea:

What if everybody (public sector and independent practitioners) have to work from a ‘statement of truth’ even if we end up identifying support that is not commissioned properly for. A basic tenet should be that is all about the child’s needs, not what is funded.

If more services and families worked together rather than arguing over the service availability versus a child’s needs, there would be a sense of honesty in the process. Families might stop feeling undermined when they hear; “we just can’t do x” instead of being told “your child just doesn’t need x”.

And maybe these two forces should join up to fight for better services for all children rather than being pitted against each other.

Encompassing interest?

Encompassing interest?

Unseasonal theme aside, who associates Christmas with tortoises?

Apparently I did when I was 9 years old.

This image is a reminder that childhood is a unique time for special interests, preoccupations and obsessions. Mine was tortoises. However the quality of my preoccupation was more of a beloved pet than making me a custodian of all tortoise related knowledge.

A cuppa and a natter

Definitely my cup of tea

Getting back to normal?

One of the little adaptations to office life to keep us safe from the coronavirus: don’t make cups of tea for each other.

Fair enough but it has made me think of what ‘a cuppa’ means to me from a language & social communication perspective:

A cuppa is part of a predictable ritualistic behaviour: a hot drink is generally offered and accepted when we visit someone’s home. The offer of a refreshment is a social expectation.

The offer of a cuppa can be withheld if the person is not that welcome or the visit is more formal. Not offering can signal displeasure or set boundaries for the relationships.

A cuppa can be used for turn taking: it is my turn to put the kettle on. Do you fancy a brew?

A cuppa can be the vehicle for a friendly heated debate about how to ‘make a proper cup of tea’ (add milk before or after hot water???). It is a way of developing arguments or participating in non-threatening banter.

A cuppa can pave the way for sharing stories or anecdotes: On my holiday to x, I was gasping for a proper hot brew and all I got was…‘.

A cuppa in a seasonal vessel (e.g. a Christmas mug in September) can spark conversations about what we think about the Christmas season (arguments for or against Christmas parties always welcome).

A cuppa can be used to check on spoken and practical sequencing skills.

A cuppa can be used to practice vocabulary for everything tea related. It can also teach time concepts and vocabulary.

And whatever does this mean to anyone unfamiliar with the British brew: milk, two sugars, please?! Inferential processing at its best!

When I work in clinic environments I always offer to make a drink.

(Autism) diagnostic assessments: the ‘cuppa exchange’ shows me something about how the person reacts to the offer and interacts during the tea making process. Chatting side by side (not direct eye contact) can help along the interaction. It is a perfect opportunity to observe small talk skills.

The funny thing is that I have had to explain (thankfully only to a few) why I make clients a cuppa in a proper cup and why I don’t just use the reception vending machine. The inference is that I am doing too much or ‘acting the servant‘.

My thinking is that it is one kind gesture I can do for my clients, patients and service users (and their families). They frequently share personal information about their difficulties and vulnerabilities. At least I can show a bit of compassion and nurturing by making a brew.

This is where the emotional communication comes in. Looking after each other by serving a nice cup of tea can signal compassion to a person who feels really anxious or exhausted by their situation.

Cups of tea build relationships some might say but we all knew that, didn’t we?

More than words?

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)


Let’s not be stubborn…

Black & white thinking

Ever thought about why some people seem so set in their views and opinions? 


We use the term ‘black and white’ to talk about clearly defined and opposing information. It is also used derogatorily to talk about people who won’t or don’t change their mind. 


‘Black and white thinking’ has in the past been associated with autism; many autistic people talk about ‘binary thinking’ instead. ‘Black and white thinking’ is often used by non-autistic people as a short hand term for ‘rigid thinking’. 

Linking binary thinking with rigidity is unfair but probably happens because it is also associated with (autistic) logical style of communicating thoughts and ideas. 


To be able to think flexibly (and not be so ‘darn black and white in our thinking’) requires a broad selection of higher level language skills. The core language skill needed is our ability to make sense of the words in context. Understanding language in context helps us detect ambiguity and ambivalence, we work out inference and appreciate the nuances of what people say. 


Words in context is what we speechies call ‘pragmatics’ and its impact on the person’s understanding and thinking is frequently underestimated. This in turn can affect the person’s emotional well being. 


Let me put this to you: if you struggled to work out what a person means by what they say. If you struggled with how the same cluster of words means different things depending on the situation and who speaks them; we would all more than likely prefer neat and clearly defined information. 


Lack of ambiguity makes us all feel secure and makes the world appear more certain. So when a person looks set in their views; think anxiety, think insecurity and consider that the person may need for predictability rather than it being a matter of rigidity of thinking only. 

Communication & mental health

Statistics of mental health and communication

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.

Communication load.

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. 

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…