Mental health support for children with speech, language and communication needs: Getting parents’ perspectives

What is the role of children’s language problems in their mental health? How does having a language problem affect the sort of support children might receive for their mental wellbeing?

These are the questions being asked by researchers from the Universities of York and Greenwich. Mya Kalsi, Hannah Hobson, Umar Toseeb and Louise Cotton want to know what parents of children with speech, language and communication needs think about their access and experience of mental health support for their children.

Previous research has shown that children with language problems are overrepresented in mental health settings. In fact, half of children in mental health settings meet the criteria for language impairment¹, and a third of children referred for emotional problems have an unsuspected language problem². This paints a picture that many children who access and receive support for mental health problems have language difficulties. However, we do not know whether children’s language problems affect the support they receive. It might be that the presence of language and communication problems speeds up recognising other problems children might be experiencing – so language problems might actually help children’s emotional or behavioural problems get noticed faster. However, it might also be the case that some interventions for children’s mental well-being (such as talking therapies) aren’t accessible for children with language problems. Also, professionals might assume that attention should be focused on the child’s language issues, and that addressing their language problems will help resolve other problems children are experiencing. This might make it harder for families to get support for their children’s mental health.

We are hoping to hear from over 300 families of children with speech, language and communication needs in the UK and Ireland. We are especially interested in hearing from parents of children with Developmental Language Disorder (DLD), but would also like to hear from parents of children with a wide range of speech, language and communication needs, including children with autism or hearing problems too. 

To take part, you should: 

• Be a parent of child who is aged between 4-16 years old, and your child has a speech, language or communication need 
• Have at some time had some concern for your child’s mental health (you might not be worried any more – we would still like to hear from you!)

If families take part, they’ll be asked to complete some questions online. They’ll be asked a bit about themselves and their children’s language difficulties. They will also be asked whether they’ve sort help from school or their doctor for their child’s mental health problems. They’ll be asked if anything stopped them from asking or getting help, and if they did get support how they found it.  We want to hear about both the good and the bad – did therapists adapt the way they worked to support your child’s communication needs? What worked well, and what could have been better?

After we complete our survey, we hope to follow up with some more in-depth interviews to deeply investigate what would help support children with language difficulties and mental health problems best.

If you are a parent and would like to take part, you can read more about this study and complete the survey at: https://tinyurl.com/DLDmentalhealth

If you have any questions or comments, or would be willing to help us spread the word about our survey, please get in touch with Hannah Hobson: hannah.hobson@york.ac.uk

Further reading:

1.        Camarata, S., Hughes, C. A. & Ruhl, K. L. Mild/Moderate Behaviourally Disordered Students. Lang. Speech Hear. Serv. Sch. 19, 191–200 (1998).

2.        Cohen, N. J., Davine, M., Horodezky, N., Lipsett, L. & Isaacson, L. Unsuspected Language Impairment in Psychiatrically Disturbed Children: Prevalence and Langauge and Behavioral Characteristics. J. Am. Acad. Child Adolesc. Psychiatry 32, 595–603 (1993).

PDA Awareness Day 2020

Can you believe that it’s five years since the first episode of Born Naughty was shown on Channel 4. Honey was the first person who I had come across who had PDA. I knew she was autistic but I knew it wasn’t typical autism. Thank goodness for an open-minded paediatrician who didn’t mind putting his neck on the line as well, to declare to the world that we felt she had PDA. 

It’s quite embarrassing looking back on my lack of knowledge of the wider implications of PDA, for example, I am heard to describe it as 'a mild form of autism.' How wrong was I? 

But I’m willing to admit that and I am not afraid to admit that I knew I needed to learn more. I have spent the last five years doing just that: talking to children and young people with PDA and listening to young people and adults with PDA plus listening to Parents of children and young people with PDA. 

I know so much more now than I did then but I also know there is so much that we need to know. Research is moving forwards but we need much more. How apt that it is actually PDA awareness day today. If you have a look at the PDA Society website they have a whole lot of quick tips and information to share with others here is a roundup of their most popular

Demand Avoidance of the PDA kind video

Introduction to PDA webinar in partnership with the National Development Team for Inclusion

Helpful approaches infographic

PDA related suggestions for healthcare passports

PDA Alert cards & PDA Awareness cards

Life with PDA

Working with PDA

Keys to care for PDA information sheet

Help spread the word and increase undrsatnding because only with undersatnding can acceptance develop.

What do you meme, you aren’t using photocopied worksheets in your social skills sessions?

This year I have been working with an increasing number of young people, who due to such high levels of anxiety, are struggling to engage:

                        - To engage in school expectations

                        - To engage in home expectations

                        - And to engage in ‘traditional’ speech                             therapy sessions

So you do what you know is essential, spend time getting to know the individual, rapport build, offering a reward..

But… what if the YP is still finding it difficult to follow the ‘adult-led’ agenda because there is the underlying demand to comply?

What do you do now?

Well most enthusiastic therapists know the importance of using a child’s interests within therapy sessions to engage them…

But.. what if the YP has limited interest in anything beyond sitting in their bedroom playing computer games all day?

Well of course we could use this as a reward to try and entice them into completing the therapy activities first

But… why would the YP ‘buy-in’ to completing your activity just because you want them too, when they are already happily enjoying their interest without needing to ‘earn it’ first?

            I myself, don’t have to adhere to persuasion of doing something I find difficult, like running a marathon, just on the promise of a ‘glass of wine’ reward at the end, just because someone said it would be in my best interest to do the exercise. I would still find it anxiety provoking to conform to their wishes, however much I liked the person and especially if I was already able to go to the fridge and pour myself a glass without. No exercise necessary!

So… faced with the dilemma of how to support my YP to ‘buy in’ to my sessions I had a serious head scratching moment until I thought about the likelihood of me running a marathon at the same time as drinking wine.

Now that is an interesting concept indeed!! Why does one action necessarily need to precede the other?

Well… despite the complicated logistics of this, I have to admit that the probability of me going for a run has significant increased.

‘Lightbulb moment’ – how can I embed my speech and language targets into the actual activity the child enjoys?

Despite my significant lack of gaming talent, one thing I found I did have in common with the YP I was working with, is enjoying the humour of memes.

So… where to start? Well after having fun sharing our favourites and discussing what we found funny about them I soon realised the previously highly anxious YP, who struggled to engage in any reciprocal social conversation, was soon confidently and spontaneously talking me through the steps of how to create my own Tumblr account.

Now, I must admit those sessions that are completely unscripted, when the therapy plan has gone shooting way off the map, is the most enjoyable part of my job and I’m happy to be a passenger to a student who feels motivated enough to take the lead.

But…what actual speech and language targets am I working on when using memes?

Well to be honest, we were actually working on a lot of therapy goals simultaneously!

Social Thinking Goal 1: initiating communication that is not routine

            When she is not anxious, Emily has no difficulties in engaging in conversations about something she is interested in. However, where before she would just talk ‘at me’, now during the sessions she can confidently initiate a narrative of talking me through the Tumblr sign up process and displayed the best turn taking skills so far; even pausing and allowing me the opportunity to ask for clarification.

Social Thinking Goal 2: Listening with your eyes and brain

When Emily was anxious, she would cover her face with her hair and squeeze herself between the sofa cushions. But now she uses ‘whole body listening’ with confident posture, joint attention and initiation of eye contact when she is communicating.

Social Thinking Goal 3: Understanding abstract language

Most of the language we use is peppered with idioms, metaphors, sarcasm and inferences and each generation of teenagers and young adults leave a trail of new slang for consumption - most of which is abstract. Through memes, I am able to teach Emily how to make a ‘smart guess’ to interpret the abstract language based on her previous knowledge, the context of the picture and the non-verbal communication clues.

Social Thinking Goal 4: Understanding perspective:

The ability to interpret others’ perspectives, thoughts and feelings is critical to social learning. Looking at memes with Emily created the opportunity to work on her Theory of Mind skills by discussing the point’s of view of not only the people in the memes but each other and our individual interpretation of the jokes. Whilst Emily was narrating how to set up my Tumblr account, I reminded her that I had no prior knowledge of the website. She was able to effectively use her own analogies to link these new concepts to the social media knowledge that my ‘inferior brain’ as she called it, already knew so that I could understand her.

Social Thinking Goal 5: Getting the Big Picture

If a picture is worth a thousand words then a ‘meme’ must be worth a million and the opportunity to share an imagination with other people is priceless. These therapy activities focused on teaching Emily to infer how to link individual pieces of information into an overall idea – to get the ‘bigger picture’.

Social Thinking Goal 6: Humour and Human Relatedness

Establishing human relatedness is essential before advancing in any therapy sessions; which is why rapport building is essential, especially with our most anxious students. Emily has a fantastic sense of humour and a very dry wit! But she often feels too anxious to use her humour successfully with others. So starting the therapy process with memes has helped to minimise some of her social anxiety.

Last year, Emily was a very anxious young lady, isolated at home and had little to no social interaction outside her immediate family. Now, although her socialising is still largely from the safe space of her house, her anxiety has decreased enough that she is interacting online with other YP with similar interests and is beginning to leave the house to visit local attractions. Everyday Emily is one brave step closer in gaining social confidence to engage in reciprocal conversations with new people.

We’ve since extended our sessions from also decoding magazine adverts and T.V. commercials to creating our own memes. It was surprisingly easy to embed all of my therapy targets into these activities; the only confusing thing was why I hadn’t tried this idea sooner!   

So what I ‘meme’ is that therapists need to stop thinking about what they think speech therapy ‘should’ look like and instead about what is the most functional and meaningful skills for the YP to learn to help them interpret social information and interact effectively with others. And not a photocopied worksheet in sight!

The Joys of silly season! December 2019

The demands of Christmas are sometimes completely overwhelming.  Buying the right
stuff, in the right shops at the right time for the right people. But the difficulties go beyond that.
Many autistic people are able to feel the weight of social expectation. For me it feels like a
suffocating pressure squeezing me into the neurotypical world. A world where I know I will
struggle, where I have struggled and where I have more recently spent much less time.
The pressure to engage in traditions that mean nothing to me. I don’t believe in Christmas
in the biblical sense of the word but I don’t inflict my opinions on others and am not
planning to start today because not even that is the most important thing to me.
The absolute most important thing to me is doing Christmas in our way. Doing what I can
to avoid the fuss and keep our version of normality at the forefront of everything we do.
Just because its Christmas doesn’t mean that outside influences should be forced upon
us. Christmas is an event created by people who don’t fit into our normal and who quite
frankly would probably hate it and that's ok.

Despite being an adult and being able to make choices for myself I still feel that overwhelming weight of expectation. It stops me from sleeping well, from focussing on the things that are important to me, it disrupts everyone's routine.

And for our children these expectations are greater still so it is our job as parents no
matter what our issues are to make sure that these expectations don’t become coercion or
guilt trips for our children. It is very easy for others to think it is ok to "encourage" our
children to join in with, do or say something that makes them feel uncomfortable. We have
to stay vigilant.

For years and years I conformed to social expectations around this time of year.
Repeating the process year after year did not make Christmas easier for me, in fact as
each year went by it became harder and harder. Yet, it is only since I began my journey
towards empowering H that I have learned to empower myself.

So now I say no, I want to shout it from the rooftops, no, no, no, no more. I am putting an end to complying to traditions that mean nothing to me and by being brave enough to say no I hope I can empower H and other autistic people to be brave enough to put themselves first and keep themselves and their mental health safe.

Why would we spent so much time empowering H to have a voice only to have someone
coerce/guilt her into something that is purely based on the social expectations of others?
From today I am saying no more.

Rachel Tenacious

A little bit about me, I am a late
diagnosed autistic parent with three
children aged between 31 and 17. H is
my youngest child she was diagnosed
with autism at age 9 and selective
mutism at 15.
We removed H from the education
system in 2015 after she had what we
now know as an autistic burn-out.
The school system didn’t suit H at all
but home ed has been amazing.
Since my diagnosis I have begun to
share some of our experiences at
support groups and am hoping to
expand this out to schools, colleges
and anywhere people will listen

When is inclusion not inclusion?

When your child/young person with SEND who has struggled in the system starts a new setting, you have all the hope in the world that this time it will be different. To begin with it seems possible that you may have finally found the place that will genuinely understand inclusion.

For us, this was mainstream number four after four years of home ed. 

After attending a course specifically designed for home ed students for year 11, we decided that this was possibly the best chance for H at post 16 in mainstream.

H had to audition for the course she wanted to do in December of the year before she was due to start. At the audition she was told that the college would definitely offer her a place on a music course. With hindsight, that was the point at which it went wrong. The reason I think this is that from that point forward we should have requested transition plans would be made and transition started especially as H was already on campus 2 afternoons each week.

We got to spring and GCSE season took over, the music department was busy with their music festival which we visited one afternoon and enjoyed. We had meetings to discuss which level course would be appropriate and to review H's EHCP, still no transition plan was made.

At this point alarm bells should have rung for us, H was having a massive wobble about attending college but we assumed it was the stress of exams and the pressure that she was feeling.

It was agreed that the level 3 course would be most appropriate for H based on her musical ability. We looked at the syllabus online but didn’t get to speak to anyone about the expectations of the course.

Then we reached summer, there was an open day for new students but for some reason H didn’t get invited. We think that it was because she was registered as a student at college already but it was another missed opportunity to begin to familiarise H with the department she was due to join and the course she was due to start.

September arrived, H had passed her maths and English GCSE which was an incredible achievement. 

H was offered an induction day alongside all the other students. It was a full day but as soon as we told the staff that a full day would be too much the length day was reduced. Which was fine but it meant that H didn’t get access to all the information she needed. She was overwhelmed and stressed and couldn’t absorb anything that was said to her.

Then college started, H's timetable was reduced as a reasonable adjustment and if there were sessions that she couldn’t cope with she didn’t have to go but....

Is this inclusion? 

I have found myself asking this question many, many times over the past 4 weeks since H stopped attending college. Yes, after 4 weeks she stopped attending and there is no hope at all of her reintegrating.

Inclusion to me means making a course accessible to all students not offering a course and then simply expecting the students to fit in with the expectations. 

H had 1:1 learning support staff, they were not responsible for including her in the course, their role was to communicate for H when she was unable to and help her remove herself if she was feeling uncomfortable or stressed, to help her to move around college if she needed to and many other things but I don’t believe that it was their role to make the course accessible to H.

From the very first day H was put into a group and had to work on exactly the same topic as all the other students, she was following exactly the same programme as others, if there were things she couldn’t cope with she was allowed to skip them. But this is not inclusion, in fact, it is exclusion. By telling H she doesn’t have to do things she is effectively being excluded from parts of the course and from college life.

When things started to go wrong and I requested work for H to do at home nothing arrived, when I requested a meeting it became clear that the staff hadn’t met a student like H before and it was obvious to me that we had reached the end of the road with mainstream.

This is how it is, the course is the course and H either needs to fit in and cope with it or she doesn’t but if she can’t there is no alternative,  there is no plan B there is no inclusive version of the course that can be adapted for H so that she can attend and achieve.

I wonder if mainstream colleges can ever be truly inclusive?

There are courses that H could do with other disabled students but that isn’t inclusion, that is segregation!

Having a 1:1 to navigate the staff and the ups and downs of day to day is integration and is part of the way there but it's still not true inclusion.

Now we are looking at specialist colleges, can they be inclusive? I don’t know.

Maybe they can be inclusive in terms of developing a package that will support H to begin to build her confidence and trust in adults away from home. They maybe inclusive within themselves and that is brilliant, but H will still be excluded from mainstream, her disability has once again prevented her from accessing a mainstream setting and in my world that shows how far we still have to travel for our disabled children and young people!

Rachel Tenacious

A little bit about me, I am a late diagnosed autistic parent with three children aged between 30 and 16. H is my youngest child she was diagnosed with autism at age 9 and selective mutism at 15. We removed H from the education system in 2015 after she had what we now know as an autistic burn-out. The school system didn’t suit H at all but home ed has been amazing. Since my diagnosis I have begun to share some of our experiences at support groups and am hoping to expand this out to schools, colleges and anywhere people want to hear me really.

           

Are we ensuring we are using a carrot and not a stick? Low Arousal: a non-aversive approach to behaviour management

“In crisis circumstances, we have to ‘ride out the storm’ and to use the sailor’s term, ‘batten down the hatches’. You are not going to be able to prevent the storm and there is no point in wishing it away!”.

Professor Andrew McDonnell’s new book, The Reflective Journey: A practitioner’s guide to the Low Arousal approach, is a fabulous ‘how to’ guide enabling families and professionals, supporting highly anxious and challenging people, to apply low arousal strategies in their everyday practises.

With child anxiety and mental health issues more prevalent than ever, families are being left significantly vulnerable from not receiving the provision they need in trying to raise a child with such challenging and individualised needs.

Working with both adults and children with extremely ‘challenging’ behaviour myself over the past 10 years, I have always had the belief that ‘all behaviour is communication’. Yet, the power of this book is that it instantly flips this narrative on its head and made me realise what Psychologist Albert Bandura had claimed: ‘all behaviour is about perception’. How the adult ‘perceives’ what the person is trying to communicate. As you may have noticed I have already referred to the term ‘challenging behaviour’ several times in this review; however, McDonnell takes a new stance and I am going to follow suit and from now on refer to it as ‘behaviours of concern’. This choice of words provides a more ‘neutral’ definition and therefore inevitably changes how we begin to observe these actions. 

As so many of the current literature in the Speech and Language Therapy and Psychology fields focuses on assessing ‘why’ a person is behaving in an aggressive or unexpected way, The Reflective Journey takes a refreshing approach by probing the reader to first look within themselves at their own actions. If we as parents and professionals are going to support the individual to adapt their behaviour, then it has to start with us!

But what is the Low Arousal Approach?

The Low Arousal philosophy advocates interaction, distraction, diffusion and physical avoidance strategies to manage, rather than change the undesirable behaviours. 

As an eternal student to my profession, I’m continually on the look-out for new therapy techniques to add to my ever expanding toolkit, but I have to be honest and admit that I am usually the person on the training workshop who is thinking, just get to the bit where you tell me the strategies, so I can ‘get going’ on the therapy side of things.

What was so thought provoking about this book, is the due to the two clear parts it has been divided into, the strategies to use with my students were not introduced until the second half and until that point had somehow, surprisingly, managed to restrain my own eagerness into first considering how essential reflecting on my own behaviour is, before trying to support the behaviours of the people I am working with.

I should have guessed that was the journey the book would take me on because the clue was in the name ‘Reflective’ and highlights the importance of ‘thinking’ before ‘doing’!.

I cannot remember a time when a work-related or ‘educational’ book as it were, kept me so engaged. By the end of the first chapter my head was already buzzing with questions about how my own actions, tiredness, tolerance levels and stress etc. over the years may have subconsciously leaked into my interactions with my students. Now, I do pride myself on my ability to ‘leave my personal issues at the door’ so to speak and to put my work face on each day – but I am only human after all! What was great about this book, is that it pulled all of those influential factors to the forefront of my Speechie brain and has since reading it, made them a lot more prominent when I am managing behaviours of concern. In my personal life, as well as my professional one!

I felt that the overall aim of The Reflective Journey was to empower any reader, regardless of experience, to be able to apply the low arousal approach by the end of reading a series of simple steps and I don’t feel it disappointed in achieving this.

Prof. Andrew McDonnell is an amazing Clinical Psychologist who has over 30 years’ experience testing low arousal techniques in countries across the world and after founding the Studio 3 organisation in 1992 is continually advocating for practitioners to move away from the more traditional ‘hands-on’ strategies towards a more humanistic and person-centred style. Low arousal is now the chosen approach in many services throughout the country.

In crisis situations our primary focus is always to ensure that everyone around is safe; though now, rather than just feeling we can merely ‘batten down the hatches’, this book has provided both parents and professionals supporting children with ‘behaviours of concern’ with easy, effective and empathic strategies to ‘ride out the storm’.

A final point to take away: Our children and students can be very hyper-vigilant, they are constantly on the look-out for any perceived threat, which inevitably increases anxiety and arousal levels. So always remember, they can sense how we feel about them! And how we ‘perceive’ them!

The Reflective Journey: A practitioner’s guide to the Low Arousal approach can be purchased from the Studio3 website for £17.99

https://www.studio3.org/product-page

Other products related to the Low Arousal approach and managing behaviours of concern that I would highly recommend include:

-          Managing Family Meltdowns: the Low Arousal approach and Autism (Woodcock and Page 2009) £12.99

https://www.jkp.com/uk/managing-family-meltdown-2.html

-          No Fighting, No Biting, No Screaming: how to make behaving positively possible for people with Autism and other Developmental Disabilities (Hejlskov Elvén 2010) £14.99

https://www.jkp.com/uk/no-fighting-no-biting-no-screaming-2.html

-          Managing aggressive behaviours in care settings: understanding and applying low arousal approaches (McDonnell 2010) £30.99

https://www.amazon.co.uk/Managing-Aggressive-Behaviour-Care-Settings/dp/0470512318

and don’t forget to check out Bo Hejlskov Elvén’s amazing Youtube series on implementing Low Arousal strategies

https://www.youtube.com/watch?v=iUUEItx-Aw0

Highly Specialist Speech and Language Therapist

Small Talk Speech and Language Therapy

natashahallam@smalltalk-ltd.co.uk