Troubleshooting:
The assessment process for Autism and ADHD
18/05/2022
While working in a school, and speaking to parents at Thriving Minds Project, many people have come to me saying they are having problems with getting assessments for their children. I have heard stories of people struggling to get support for their child.
In this article, I will give an overview of the assessment process, what to expect, and how to get support in place. At the bottom you will find contact details for the services mentioned. The aim is to make the process a little clearer for parents and carers. A few suggestions are given about adaptations, but this is by no means an exhaustive list.
Note:
The term Neurodivergent is an umbrella term used to describe people whose brains are wired differently to the typical person. People with ADHD and Autistic people fall under this umbrella. Here, the term ADHD also refers to ADD, which describes the Inattentive Subtype of ADHD. The term Autistic also refers to ASD, ASC and Asperger's; Autistic is the preferred term in much of the Autistic Community.
How do I get my child an assessment?
There is a common misconception that you need to have a referral to the Child and Adolescent Mental Health Service (CAMHS) to get an assessment. This service deals with an extremely high volume of referrals, and it can take over a year to reach the top of the waiting list. Parents don’t, however, need to be using CAMHS to get an ADHD or Autism assessment for their child.
In Northampton, parents can get advice and request a referral for ADHD or Autism by contacting the 0-19 service. You can also go through your GP, or your school’s Special Educational Needs Co-Ordinator (SENCO) who can make a referral. Of course, there are times when a CAMHS referral may be necessary too, which the 0-19 Service and GP can also help with. Details for these are below.
What will the assessment involve?
As part of the Assessment process, the school and parents or carers will be asked to provide information about the child. This is usually done in the form of a questionnaire. To diagnose ADHD or Autism, they will be looking at whether there are problems in more than one environment – usually home and school. This shows that the problems the child is experiencing are present in multiple areas of life, and not connected with just one situation. This can be a hurdle for some children, who may mask their difficulties when at school and only show signs of struggling at home, where they are feeling safe.
In some cases, schools have refused to acknowledge that there is a problem in the school environment. If the child is managing to attend regularly, succeeding academically, and not being disruptive, their needs can be overlooked. Meeting with the class teacher or the Special Educational Needs Co-Ordinator at the school can be a good opportunity to express any concerns you have about your child, which they may not be vocalising at school. This is important, because you will need the support of the school going forward.
Once the parent or carer, and the school have returned the assessment, there is then a long wait for an outcome. In Northampton, people currently wait several months for the outcome of an ADHD assessment and up to 18 months for an Autism assessment. During this waiting period, you can still begin to make changes at home, and schools can still make adaptations. You do not need a diagnosis for support to be put in place, although how much support is offered can vary drastically from school to school.
My child has received a diagnosis, what now?
If your child has received a diagnosis, chances are they have been struggling at school and at home. It can feel overwhelming, and some people experience a sense of loss or feelings of guilt. But the reality is, your child has always been Neurodivergent, it is who they are, and now that you know, you can put things in place to improve their wellbeing.
At home, you may now realise that your child’s emotional outbursts are actually Autistic meltdowns. You may see that your ADHD child becomes disruptive because they are overwhelmed, and can’t control their impulses. This change in viewpoint can help you deal with emotionally heated times in a compassionate and productive way.
Observe and talk to your child about the things that trigger meltdowns; loud noise, bright lights, change to routine, making demands, are only some of the possible triggers of a meltdown. Parents and carers can work on communicating with their children more effectively, by explaining and planning for changes before they occur. They can use sensory tools with their child to help them to regulate their emotions. They can offer more flexibility and patience to their child.
To help with emotional regulation, parents and carers can schedule in activities which allow their child to meet their sensory needs, such as walks, playparks, messy play, or even a bubble bath. Using low lighting, fidget toys and sensory bottles can help children to calm down at bedtime, too. What works for one child won’t work for every child, so it’s important to communicate and find out what works for them.
Schools also have a duty to make reasonable adaptations to allow Neurodivergent children to thrive in school. This could be the use of sensory toys, altering seating arrangements, quiet spaces, providing timetables in advance, and providing a reduced timetable, to name a few. Some schools are brilliant at this, and will make adaptations even before a diagnosis.
The first step in getting help at school is arranging to meet with your child’s class teacher. You can use this opportunity to discuss any problems your child is facing, and what adaptations your child would find helpful. If there are any issues putting this in place, the school SENCO should be able to support this – you can also request a meeting with them.
For children who may need further changes to their school environment, or where attempts to put something in place have failed, you can request an EHCP (an Education, Health and Care Plan). Importantly, this plan is legally binding, meaning the support detailed in the plan must be provided. This can be really helpful if the school has not been so supportive.
Useful details
Thriving Minds Project: email lissy.pattison@thrivingmindsproject.co.uk if you would like more information or support from us.
Children's 0-19 Service: 0800 170 7055 Option 4. Request to speak to the Duty School Nurse.
Referral via school: Contact your school’s SENCO (or equivalent) and request that they make a referral. They can go onto the Children’s 0-19 Service website to access the form: Go to www.nhft.nhs.uk/0-19/ and click on ‘Professionals’.
Referral via GP: GPs can also make a referral using the form on the Children’s 0-19 Service website: www.nhft.nhs.uk/0-19/ and click on ‘Professionals’.
5 simple sensory accommodations schools can make
09/05/2022
1. Sensory toys
Let’s start with the basics. Fidget toys, or sensory toys, are, thankfully, becoming more and more widely accepted by parents and teachers and are being used by neurotypical and neurodiverse groups alike. Pocket-sized toys such as stress balls, tangles, infinity cubes and more are ideal for the classroom environment, and can help people to concentrate on complex topics, or manage their anxiety so that they can refocus on class.
However, there is still a temptation in many schools to ban anything perceived as ‘distracting’. Admittedly, there is the potential for them to become distracting, however if they work well for a child to manage anxiety then they can actually have the opposite effect, and children who use and benefit from them are less likely to take advantage or distract others with them.
2. Uniforms
While I am not completely against uniforms, the way uniform policy is approached needs to change. We live in times of changing professional identities. Adults in a number of professional roles are able to apply flexibility to their work attire, expressing some level of individuality and personal choice. Some argue school uniforms create a sense of common identity within school communities. However, even valued careers such as nursing place an emphasis on practicality over smartness when it comes to setting uniforms, recognising that it is what people do, and how they work, that matters, rather than the clothes on their backs.
Many school leaders dictate not only what the uniform consists of, but even whether it is hot enough to remove a blazer or cold enough to put on a pair of gloves (all the more pertinent when we are leaving windows and doors open for ventilation). As an adult, I would be furious if my boss penalised me for taking off a layer when I’m feeling hot. Why should children not be granted this autonomy?
While the comfort of clothing is important to many of us, it can be a particularly big issue for children who have sensory processing disorders. For some, even the feeling of a label or a bulky seam can feel intolerable. Stiff collars and tight waistbands can be a major source of distraction. Feeling uncomfortable can increase irritability, making children more prone to displaying the very behaviours that schools want to quash.
Uniforms don’t need to go completely (although there are definitely arguments for this) but we need to use more compassionate judgement when deciding what we want children to wear. Some schools have had success with active uniforms such as jogging bottoms and sweatshirts, which keep children comfortable and enable them to be more physically active throughout the day.
3. Movement breaks
A sedentary lifestyle is contributing to physical and mental health problems in the whole population. But movement is even more crucial for children who are Autistic or have ADHD, and those with mental health conditions such as anxiety.
Let’s take a moment to talk about stimming. Stimming is when someone acts to create soothing sensations for themselves, and often involves movement (although it can involve any of the senses). It’s important to note that anyone can stim, and we all have sensory experiences we enjoy and seek out to calm ourselves. Autistic children need to stim in order to regulate themselves emotionally. This means having time to get up, move around, and stim without drawing attention to themselves. Sitting in class, in a seat, for a whole hour (and again and again throughout the school day) inhibits the ability to stim. This reduces concentration on learning and causes emotional dysregulation.
In children with ADHD, who also stim, movement and changes to activity are vital for their ability to concentrate. These children will often get in trouble for swinging on chairs or getting up out of their seat, and this is wrong. These are not behaviours meant to cause disruption but caused by a physical need for movement and different stimulation. Enabling children to work in a physically active way is great, but if it’s not possible or practicable we can still let children identify when they need to get out of their seats, encourage them to walk around the room, or even do some star jumps during lessons so they can go back to their desks with more focus.
Speaking of desks, there are alternatives to the classic hard chair / table combo. Standing desks, stools, even bean bags and inflatable balls are possible alternatives that enable positive movement while still learning, and could make such a difference if they were adopted in more classrooms. Some children are much more able to focus and, for example, read a textbook or answer a page of questions if they are given these alternatives.
4. Ear plugs
So many times, children have told me they struggle with noise in their classrooms and in corridors. Noise that can increase anxiety for some, and provide a distraction from work for others. Yet school leaders are often against the idea of children wearing earplugs in class.
There may be misconceptions at play here. Some presume that ear plugs will prevent children from listening to their teachers. Precisely the opposite is true! There is a growing market for specially designed earplugs used by many adults who experience sensitivity to sound. These ear plugs can drown out background noises such as chatting or the ticking of a clock, and enable the person to focus more easily on whomever is speaking to them. And if they *did* inhibit the child’s ability to hear the teacher, well, they can always be briefly removed and then put in when it’s time to get on with work.
Allowing ear plugs or indeed noise cancelling headphones is something that can so easily be adapted into school policy, it’s definitely worth a try.
5. Staggered corridor times
Something I really struggled with when working in a school was the busy bustle of school corridors. I never liked it as a kid, and probably liked it even less as adult who is shorter than the average 14-year-old. Sights of busy corridors were briefly abandoned when the pandemic hit, but have made a return in many schools as restrictions have been removed. But should we be rushing to return to this practice?
Of course moving around the school is important for many children. But corridors crowded with kids are overwhelming for anxious and neurodiverse people, full of visual (seeing), auditory (sound) and tactile (touch) stimulation. They can also pose a hazard to children with mobility problems, and continue to pose a risk of Covid infection.
I propose a different approach. Utilizing one-way systems in corridors and stairwells, staggering lesson times so children are in corridors over a wider period of time, and planning timetables around how students need to get from A to B.
This one has some real health and safety benefits, as well as benefits to wellbeing, which makes overcoming any logistical challenges worth it in my opinion.
Changing how we think about ‘bad’ behaviour
'We need to have curiosity and openness about why children behave in a certain way'
Last week I watched the Every Child Flourishing Event held in June 2021. The event covered a number of topics relating to the impact trauma has on children’s behaviour and development. There were a number of viewpoints given from professionals and care leavers. I'm going to summarise some of the things that really resonated with what we are working towards at the Thriving Minds Project.
Understanding trauma starts by understanding the development of the brain. At a basic level, there are three distinct ‘brains’ that were talked about during the event. The first was the brainstem, responsible for survival and the ‘fight, flight, freeze’ response which helped us escape predators in our early evolution. These responses are innate and not easily controlled. The second part is the limbic brain, responsible for emotions and memories. The third part is the pre-frontal cortex or ‘thinking brain’ which we use to analyse situations and make rational decisions.
Children who are in ‘survival mode’, in order to cope with a traumatic environment, are less able to access their pre-frontal cortex, relying more on their ‘fight, flight, freeze’ instincts. They often exhibit behaviour which is deemed inappropriate such as fidgeting, zoning out or fighting. This behaviour, however, is a response to being in this survival mode, rather than deliberate rule breaking or poor decision making. Language is part of the pre-frontal cortex and cannot be accessed when in survival mode, making it difficult to help children if only a talking approach is offered.
Practitioner Louise Bomber spoke about children who are exhibiting poor behaviour are often being ‘misinterpreted and misunderstood’ by their teachers and care givers. She states that how we approach children’s behaviours ‘can make all the difference between exclusion and inclusion’.
As many of us have witnessed, more and more children are struggling with toxic stress, exacerbated in some cases by the pandemic. The stress affects executive function, making it more difficult for the child to focus on the organizational skills and workload that is expected of them by school. It can also affect regulation and psychological development of children, which means they are not able to control the emotions as they might be expected to, and the intensity of the emotions can become overwhelming.
Louise said children who have been through traumatic experiences have the tendency to never allow themselves to be ‘small, weak and defenseless’ again. Children who misbehave can come across as defensive for this reason. Defensiveness is not deliberate, because the reasoning part of their brain is not activated when they are in a trauma state. When children respond in this way, we need to first make them feel safe, so they can trust us, and we can reach them.
To help the children who are experiencing stress and trauma, schools should focus on mind body interventions, use sensory tools, and teach children ways of regulating themselves. Cognitive tools, such as talking about emotions and problem solving can be useful for reflection, however at times when a child is experiencing high levels of stress, they are not able to access these tools. Psychotherapist Betsy de Thierry* explained that schools are dependent on a child’s ability to use words to describe how they’re feeling. However, multiple traumas and pervasive trauma changes the brain and ability to use words when they’re in the trauma state.
Policies and practices that are commonly used in our schools can inadvertently activate a fear response in the child, which prevents the child from engaging effectively in the resolution strategies schools often use. Professor of Developmental Neuroscience and Psychopathology, Eamon McCory, talked about the very common ‘Zero Tolerance’ to bad behaviour practices in schools. He concluded that these practices can stop schools from exploring why children are showing certain behaviours as individuals, and finding solutions to those problems. Awareness of trauma should inform whole school policies so that all children are being regulated enough to be able to engage in their learning. Betsy de Thierry spoke a lot about the environments that children are in, asking us to consider communication within the family, and what else is going on in their lives. She said schools and care givers need to both be involved in helping the child, and that the whole school culture needs to change to help achieve these goals.
Professor McCory also talked about the range of impacts lockdown has had on children’s mental health. Some children have benefitted from lockdowns as they have been less anxious due to being at home. However, other children will have found it a traumatic experience. I myself have seen this pattern in children I’ve worked with – some who are dealing with trauma due to isolation and bereavement and others who were doing well at home but can’t cope with being back in a busy and demanding school environment. We need to have curiosity and openness about why children behave in a certain way.
At the Thriving Minds Project, we want to work with schools to develop up to date policies on behaviour that take all of this into account. We also want to work with children, carers and schools to introduce more sensory work to regulate children’s emotions when using only words is not effective. This will help children to feel safe and understood, which will ultimately enable them to get more out of their learning and meet their goals.
* A quick dig shows Betsy de Thierry has some unusual views on ADHD and Autism, and has previously stated that Trauma is often mislabeled as ADHD or Autism (and even going as far as saying they do not exist). I want to make it clear I do not agree with these views, having had extensive personal and professional experience with people with these diagnoses. However, she appears to be knowledgeable about trauma, and I admit there is certainly some overlap with the behaviours that often relate to trauma, such as sensory needs and communication barriers, as well as the high prevalence of trauma in the Autistic population.
Why I started the Thriving Minds Project
'The school environment, the home, and social factors all impact a child’s ability to cope.'
My name is Lissy Pattison, and I have had a passion for understanding mental health since I was at school. I began training to be a mental health nurse at the age of 19. In my final year of study, I began to specialise in children and adolescents’ mental health. I developed a practice improvement plan for using Mindfulness Based Stress Reduction to help teenagers with mental health problems, and took a job in an adolescent inpatient unit.
After several years working in acute inpatients as a senior staff nurse, witnessing a wide array of difficult stories, I decided to make a move into prevention and early intervention. I took a job in a secondary school, offering 1:1 Mindfulness and Dialectical Behaviour Therapy based sessions to children that needed support, and assisting in an alternate provision.
My experiences have enabled me to see the fuller picture. The school environment, the home, and social factors all impact a child’s ability to cope. School attendance teams and desperate parents and children, are struggling against each other as they work towards getting ‘school-refusers’ back into lessons. I decided to use the term ‘non-attendance’ as an alternative, more accurate term.
A common theme in the children facing mental health challenges, and non-attendance, is neurodiversity. Specialist support is severely lacking, and classrooms are all too often set up in a way which doesn’t work for these children. Many children, especially girls, are not getting diagnosed until late in their teens, leaving them with even fewer accommodations.
This experience has fueled me to create a new local service to make a real difference in young people’s lives. We need to teach people the self-soothing and mindfulness skills that can help them in difficult times. But to make a lasting impact, schools need to be inclusive and accommodating of differences regardless of whether there are diagnosed children in the classroom. We need to shift the mindset of non-attendance so that mental health is validated and recognised in the same way that physical health is. We need to help families to communicate healthily with each other, and learn how to support each other.
These changes will take time; they require families, carers, school leaders, teachers, children, to be open to examining how they work and take on board new ideas. That’s what the Thriving Minds Project aims to achieve.
© Copyright. All rights reserved.