Autism* runs in families. In my family it runs very strongly, and so does anxiety.
When I first qualified as a clinical psychologist in 2005 and got a job in an NHS CAMHS team, I was asked to run the autism service supporting families of newly diagnosed children. I must admit, I wasn’t very pleased. I didn’t think I had enough experience and I didn’t think it would be rewarding.
Luckily I was wrong on both counts.
Firstly, my family background had given me plenty of experience of autism (I just didn’t make the connection at the time). Secondly, I love getting to know children with autism as they can be fascinating and unique.
I often come away from a meeting with a family with a new and interesting perspective on something or a new piece of knowledge.
Autism is now my specialism and about 90% of the children I work with are autistic.
“The World is Not Designed for Me”
However… working with families who have one (or more) members with autism can also be sad and frustrating. Not because of the families themselves but because the world is designed for neurotypical (non-autistic) people.
Take schools for example.
Secondary schools in particular.
Some secondary schools have 1500-2000 students. Teachers may each over a hundred students each day. It is difficult for them to learn everyone’s names, let alone understand each child’s difficulties and needs.
Secondary schools tend to involve multiple transitions per day. Classroom to classroom. Teacher to teacher. Lesson to lesson. Class groupings are often different from one lesson to another. Children with autism tend to find it harder to make transitions, and often to get started on tasks.
Organisation and Planning
For some children with autism, organisation and planning are difficult. A complicated day with multiple lessons is not a good match.
I haven’t even mentioned sensory overload yet!
As children with autism generally process sensory information in a different way, the noise, bright lights and visuals, textures and smells (in the school canteen for example) can be completely overwhelming for a child’s nervous system.
Friendships and Social Interactions
It can be so hard to find a kindred spirit in such a sea of individuals. This nearly always happens eventually but it takes time.
Navigating social interactions is much harder in large groups and when there are so many people. It is harder to follow what is actually being said, let alone “read” the facial expressions, gestures, tone of voice and subtle double meanings that might be present.
Children might need to do this dozens of times each school day.
The Link Between Autism and Anxiety
Unsurprisingly, the massive demands described above put a strain on the nervous system.
Put simply, the child’s stress cup is full.
Understandably the brain detects this as a threat. (“I am full up so I can’t deal with any more challenges safely.”) The brain and nervous system move into full alert – “survival mode”.
The body produces higher levels of the stress hormone, cortisol. Instead of learning and enjoying school life, the child’s brain forces them to constantly be on the lookout for dangers and to expect the worst.
This is exhausting.
The result is anxiety.
TAKE THE QUIZ!
Autism and Anxiety: Caused by an Imperfect World
According to the organisation Autistica, 42% of autistic children have a diagnosable anxiety disorder.
I certainly see this link every day in my clinic, Everlief.
Anxiety is not the fault of the person with autism or their family. It is a normal response caused by living in a poorly designed world.
There are five things we can do:
1. We can (and should) try to change the world.
For example, we should try to seek changes in schools so that all pupils’ wellbeing is the top priority over anything else.
You might write to your school, education authority, your MP, or share campaigns on social media.
I must point out that there are some excellent, nurturing secondary schools both in the state sector and the private sector. I work with a number of those schools here in Buckinghamshire. Autistic children in these schools can (and do) flourish.
Whilst we are changing the world (!) we must remember to do one thing. We must constantly remind our children that it is not them who is “faulty” but the world around them.
Children with autism can – and regularly do – thrive and live successful lives.
This only happens if they are lucky enough to attend a school which nurtures all children, celebrates individuality, and provides individualized support. Home-schooling is also a setting in which autistic children often thrive.
Of course, wherever they go to school, children’s home lives must also be set up to help them thrive.
2. We can make some changes to our child’s environment to prevent their cup filling up quite so quickly.
For example, we can set up quiet areas at school and at home, where the brain can take a break from sensory overload and recover, reducing anxiety.
My article about school-based anxiety outlines how to work with your child’s school and make environmental changes to help children thrive.
3. We can also teach children skills to calm their overwhelmed nervous systems.
4. We can adapt our own parenting style.
When a child is anxious s/he needs to feel safe. In essence to reduce their anxiety, you should:
- Try to remain as calm as possible and look after your own wellbeing (two anxious and stressed people feeding off one another can lead the anxiety to snowball!).
- Increase nurture and feelings of safety at home – no matter whether your child is four or sixteen.
- Increase the amount of “down time” or pure relaxation time for your child when anxiety is high. This may be a temporary measure, just so the nervous system can recover.
4. Therapeutic support
Not all children with autism and anxiety need to come and see a psychologist for therapy sessions.
However, if anxiety is having a major impact on your child or on your family, and you feel you need more than what you have already tried, it may be time to seek help.
You should first visit your child’s doctor to discuss your concerns. In the UK help may be available via the NHS, although this is increasingly rare unless your child’s anxiety is severe.
You can also seek help from an independent psychologist, using the British Psychological Society directory or the ACHiPPP (Asociation for Child Psychologists in Private Practice) directory.
Other professionals, such as CBT therapists, may be able to help, but always check that someone offering psychological therapy is registered with the HCPC (Health Care Professions Council). This will ensure your therapist is properly qualified and insured to support your family.
If your child is around nine years old or younger, the psychologist will probably work much more with you than with your child.
For older children, therapists will work with the child but will involve you. It is important that you understand how to help your child and what the child is learning.
Talking therapy may need to be adapted to support autistic children.
For example, in my therapy sessions I often use more visuals (pictures and diagrams) with children who are autistic as the visual part of their brain tends to be very strong.
I may also play more games, or even go for walks outside with them during the session, if making eye contact is hard for them or if we need to take the pressure off.
If you seek help, make sure your psychologist/therapist is experienced in autism.
5. Online Support
I have got together with four fantastic colleagues to create an online course for parents of recently diagnosed children called Embracing Autism. It’s also suitable if your child is on a waiting list. Take a look!
If you are looking for direct support for anxiety take a look at my online course for parents, Outsmart Anxiety.
Dr Lucy Russell is a UK clinical psychologist who works with children and families. Her work involves both therapeutic support and autism assessments. She is the Clinical Director of Everlief Child Psychology, and also worked in the National Health Service for many years.
In 2019 Lucy launched They Are The Future, a support website for parents of school-aged children. Through TATF Lucy is passionate about giving practical, manageable strategies to parents and children who may otherwise struggle to find the support they need.
Lucy is a mum to two teenage children. She lives in Buckinghamshire with her husband, children, rescue dog and three rescue cats. She enjoys caravanning and outdoor living, singing and musical theatre.
*I will use the term “Autism”. It is also known as ASD (Autistic Spectrum Disorder), and ASC (Autistic Spectrum Condition). There is controversy about all of these terms.