Strength and power: autistic pupils and their parents’ experiences of support in secondary school

CRFR Associate PhD student Elizabeth Graham writes about her research exploring children with autism and their experiences of social and educational support in school.

In recent years there has been a significant driving force to teach and include autistic pupils in mainstream schools (Humphrey, 2008). Beardon (2017) asserts that it is autism and the environment that equates to the outcome. For example, surroundings can impact on the level of difficulties experienced. Therefore, the focus should be on adapting environments to better fit those with differences as opposed to encouraging autistic individuals to fit. What follows is a brief insight into autistic pupils and their parents’ experiences and expressions of strength and power when navigating an educational system that does not fit.

Strength can be defined as the emotional or mental qualities necessary in dealing with difficult or distressing situations. The young people in the study displayed great strength when dealing with distressing day to day experiences at school. Most described having no friends, being bullied and isolated, feeling anxious, unsupported, ‘horrible’, unwanted, ashamed and having their confidence knocked. Some also conveyed how they struggled with sensory issues such as noisy classrooms and how they felt claustrophobic in narrow busy corridors. Parents shared how their children would have to recover from the school day in various ways when home: crying, shutting down, and sitting under their covers to recharge. Despite this, some young people are still able to walk through the school doors most days and some even manage to uphold an excellent attendance record.

Parents also demonstrated much tenacity in fighting for their child’s experiences and intelligence to be understood and recognised, to take failing grades seriously, prompting for support to be put in place and some feeling like they have had to fight ‘every step of the way’. This includes requesting meetings with numerous people such as head teachers, deputy head teachers, pastoral heads, head of learning support. This is no mean feat when coupled with the impact of their child’s diagnosis, the level of care some provide at home, worrying about their child when at work, the heartache of hearing their children express suicidal thoughts and subsequent feelings of guilt and being a ‘failure as a parent’. They also have additional challenges of dealing with family members who don’t understand, feeling alone and unsure and sourcing external support for themselves and their children.

Power is usually thought of as the exercise of will of one social actor over others. The young people in this study exercised a degree of control by withholding information from their parents about some of their experiences at school (e.g. bullying) with the intention of stopping their parents intervening. They were also able to regulate their surroundings when home from school by shutting down and not interacting with their parents. In contrast, parents had the authority to make their children go to school, do homework, limit Xbox and Wi-Fi or reading time. Parents also had a limited ability to effect changes at school, for example, meetings, reversing changes that were implemented (e.g. having their child moved back to a seat they were comfortable with in a classroom) and ensuring their child sits exams that they know they are capable of. Whilst parents acknowledge the efforts of some teaching staff and that support for their children is restricted due to limited resources and budgets, they feel that in the education system as a whole, they and their children hold very little power. 


Elizabeth-Anne Graham is studying for her PhD at the Faculty of Social Science, University of Stirling.


References

Beardon, L. (2017) Autism and Asperger Syndrome in Adults, London: Sheldon Press.

Humphrey, N. (2008) ‘What Does ‘Inclusion’ Mean for Pupils on the Autistic Spectrum in Mainstream Schools?’ Journal of Research in Special Educational Needs, 12(1): 23-46.

 

The use of poetry to convey emotions in Masters and Doctoral work

Tomorrow's Emotions Series Seminar, The use of poetry to convey emotions in Masters and Doctoral work, will be delivered by Ruth Aird and Kath MacDonald. Ruth and Kath met when Ruth was a Masters student at Queen Margaret University, where Kath is a senior lecturer. They both share an interest in poetry as a means of dissemination of research and as a basis for teaching. Together they have developed Ruth‘s work on Impostership, which will form part the seminar; the other part will showcase Kath’s Doctoral work around the expert patient and living with a long term condition. Here, Ruth and Kath each present one of their poems for us.

Ruth:

Emotions and perception vary depending on the place where you are standing to view the world. If I was standing on a wet, cold and windy mountain with the clouds swirling around me, clawing at my damp clothes, I would be fairly miserable. But if I was looking up at that mountain from the warm shelter of a cottage, with a crackling fire spitting in the hearth and the smell of soft baked bread infusing the wooden beams, I would feel safe and protected with a warm sense of well being. Unless I go and stand on that mountain I cannot understand or enter into the feelings and emotions of that other person, neither have I earned the right to comment.

This poem is the mind story of a girl on the shore watching a seal in the sea watching her. 

 

Perception and my world

I saw her standing on the shore
I was safe, she was not.
She stood on hard unyielding granite
But I could feel the tremors
Which moved the land beneath her feet.
There was no support to shield her
From the buffeting of the unrelenting wind
While I was held on every side
Safe and secure in a liquid cushion.

She shivered slightly, shoulders hunched
Against the next wave of wind
Gathering behind the high stone wall
Waiting to pounce when she least expected.
Dry white grass clutched her feet
As she turned away, one last envious look
At my emerald empire, I saw her trudge
Towards a box of stone, locking herself in
Against a world of uncertain destiny.

 

I saw him watching me
I was safe, he was not.
Head above the angry waves
A curious eye upon my green utopia.
The surface of the sea shifted
With continual uncertainty, lashing the rocks
At the perimeter of his prison.

The blubber on his back was fixed
No impression from the seething cauldron
Could be seen from my perspective.
A storm gathered on the dipping horizon
His neck was too thick to turn and see danger.
As he slid beneath a corkscrew wave
I saw him flapping a sad goodbye
Sinking to slimy depths amongst
The forest kelp, his vision sadly dull.

Papa Westray, Orkney, October 2008

 

Kath:

I have found that using poetry as narrative can help to illustrate emergent meanings and streams of consciousness in a more powerful way than prose. 

My experiences of experimenting with this form of media have taken me in new directions which I am excited about and will share in the forthcoming seminar on 9th December. I am really keen to develop this work and want to know if there are other like-minded people out there who are already part of a group or who would like to form a poetry group to develop similar work - please contact me on kmacdonald@qmu.ac.uk

Here is an extract from a piece of work, which relates to the theme of normalcy as a coping mechanism in chronic illness.

What’s in a norm?

 

In a socially constructed world there is no such thing as normal
So says Thorne (1993)
But as for me
CF is all I’ve known so it’s normal you see; for me
People ask: what’s it like living with cf?
It’s just the way it is I say- not always ok
embedded, routine
Just part of my day
And my biography
So I don’t see it as extra
The way others may
So when you ask me – what’s it like?
I don’t report it that way
Its just part of my day

To hear more of Ruth and Kath's poetry, book a place at their seminar:

Wednesday 9 December, 12-2pm at CRFR, 23 Buccleuch Place, Edinburgh
The seminar is free, but booking is essential via crfr.events@ed.ac.uk or 0131 651 1832
 

Ruth E. Aird, NES National Coordinator for General Practice Nursing Scotland (Job share) RGN* ONC MSc (Ed). Ruth is a General Practice Nurse who has been working in practice for 18 years and is now working for National Health Education Scotland.

Kath MacDonald D.H&SSc, MSc, PGCE, RGN, is a senior lecturer at Queen Margaret University.

Helping parents help children: do we know what works for children with long-term health conditions?

How easy is it for parents of children with long-term health conditions to make sure treatment plans are followed? Alina Morawska, from the Parenting and Family Support Centre at the University of Queensland explores some of the factors that influence the successful management of chronic conditions and asks what can be done to better support parents?

Can parents and the way they deal with their children’s behaviour actually make kids’ sick? Of course, this is a simplistic question and thankfully we have moved beyond the days of parentectomy(1), when removal of parents was thought to be an appropriate treatment action for chronically ill children. Yet, there is also no doubt that what parents do and how parents and children relate greatly matter to all children.

In population health terms, the question of how we can help families of children with chronic illnesses is an extremely important problem to consider. Childhood chronic health conditions, such as asthma, eczema and diabetes are common, and rates are on the rise around the world(2). It is estimated that up to a quarter of Australian children are diagnosed with long term health conditions, and while most are not life threatening they bring considerable burden for children, families and communities.

Most chronic health conditions require ongoing medical care and management. The burden of this care largely falls on parents. Parents are ultimately responsible for ensuring that children apply their eczema creams, that they take regular blood glucose readings or that they have their asthma reliever with them when they go to school. While some treatment actions are relatively straightforward, others are quite complex and require considerable knowledge and practice to implement correctly – something parents have had little preparation or training for.

The situation is further complicated by the fact that children generally don’t understand the long term benefits of treatment. As most of us have experienced at some point in our lives, treatments can be unpleasant, uncomfortable or painful. Thus, treatment requires the parent to get the child to do something they don’t want to do essentially because their parent asks. This of course mirrors any other parent-child interactions where parent and child goals and motivations differ – cleaning up rooms, completing homework, limits on screen time – however the child’s resistance and refusal to cooperate in the context of illness management is particularly problematic. Parents and children need to be able to communicate well in a positive, supportive and loving context in order effectively and correctly undertake the treatment. Over time, the transfer of responsibility for illness management from parent to child is best done when both parent and child are working together and communicating well. If the parent finds the task of getting their child to take their medication too hard, too stressful and too overwhelming they may simply give up.

Do parents really give up and not persist with their child’s prescribed management plan? We know that non-adherence with treatment and prevention is around 50% and can be as high as 75%(3). Is this just because children refuse to take medication and parents give up? Of course not; there are many reasons for non-adherence, simply forgetting being at the top of the list. But parents do say that their child’s resistance to treatment plays a role in non-adherence(4).

Non-adherence is a well-recognised problem, yet to date interventions to improve adherence, which have largely focused on education, have not been particularly effective(5). It is also the case that the effects of psychosocial parenting and family interventions on outcomes including parenting, mental health, and child illness symptoms have been limited(6). Notably, the majority of studies to date have not targeted parenting practices specifically and those that have, have had mixed outcomes.

So what should we do? How should we help parents?

Our paper(7) outlines the links between parenting and child behaviour and makes recommendations for the development and testing of parenting interventions in the context of childhood chronic health conditions. We also make some suggestions for how parenting intervention might be used to support parents, but of course whether such programs are effective is still largely an open question. We hope that research at our Centre and the work of many others around the world will be able to provide some guidance on what works and what doesn’t in the near future.

The Journal of Child Health Care has kindly made the article, on which this blog is based, open access until 2 May 2015. Please read the full article: Parenting interventions for childhood chronic illness: a review and recommendations for intervention design and delivery.

About the Triple P programme
The Triple P – Positive Parenting Program is owned by The University of Queensland. The University, through its main technology transfer company, UniQuest Pty Ltd, has licensed Triple P International Pty Ltd to publish and disseminate the program worldwide. Royalties stemming from published Triple P resources are distributed in accordance with the University’s intellectual property policy and flow to the Parenting and Family Support Centre, School of Psychology, Faculty of Health and Behavioural Sciences, and contributory authors. No author has any share or ownership in Triple P International Pty Ltd. Alina Morawska is an author of various Triple P resources.

Contact Alina: alina@psy.uq.edu.au at the Parenting and Family Support Centre, School of Psychology, University of Queensland

References

1. Robinson, G., 1972, The story of parentectomy. The Journal of Asthma Research, 9: p. 199-205.

2. Van Cleave, J., Gortmaker, S.L., and Perrin, J.M., 2010, Dynamics of obesity and chronic health conditions among children and youth. JAMA, 303(7): p. 623-30.

3. Morton, R.W., Everard, M.L., and Elphick, H.E., 2014, Adherence in childhood asthma: the elephant in the room. Arch Dis Child, 99(10): p. 949-53.

4. Burgess, S.W., Sly, P.D., Morawska, A., Cooper, D.M., and Devadason, S.G., 2008, Assessing adherence and factors associated with adherence in young children with asthma. Respirology, 13: p. 559–563.

5. Dean, A.J., Walters, J., and Hall, A., 2010, A systematic review of interventions to enhance medication adherence in children and adolescents with chronic illness. Archives of Disease in Childhood, 95(9): p. 717-723.

6. Law, E.F., Fisher, E., Fales, J., Noel, M., and Eccleston, C., 2014, Systematic Review and Meta-Analysis of Parent and Family-Based Interventions for Children and Adolescents With Chronic Medical Conditions. Journal of Pediatric Psychology, 39(8): p. 866-886.

7. Morawska, A., Calam, R., and Fraser, J., 2015, Parenting interventions for childhood chronic illness: A review and recommendations for intervention design and delivery. Journal of Child Health Care 19(1): p. 5-17.