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?