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Family Perspectives on Education

In this article, two families share their experiences of education and applying the Low Arousal Approach with young people, and the impact this has had on their lives.


A Low Arousal Approach to Education, By Rachel

'First, a bit of background: I am a late diagnosed autistic parent to three amazing adults, the youngest of whom is also diagnosed as autistic. I think it’s fair to say we are a neurodivergent family.


I work very part time as a SEND advisor for a small Midlands-based charity called Talking SENse!, and when I can I run ‘next level’ autism training. This includes training specifically around demand avoidance and, more recently, around being female and autistic. I am also a Studio 3 Ambassador.


Those are not my main jobs though; my main job is being a parent/carer/educator and more to our youngest young person, who for the purposes of this article I will call H. For the last eight years we have been home educating, and since 2020 we have had a very small therapeutic EOTAS package of six (yes, six) hours per week funded by our Local Authority.


Our journey into Low Arousal began somewhere, but I am not entirely sure where or when. Standard parenting and education systems never really worked for H, so over time we slipped into something that we now know as Low Arousal.


H demonstrate very high levels of stress in everyday life from a very young age. Us completing household chores such as vacuuming, using a blender, drilling a hole and using the lawn mower caused massive sensory overload and would lead to uncontrollable sobbing and distressed behaviours such as shouting, screaming, and aggressive outbursts. Luckily we were quick learners, and instead of trying to get H used to these things we found other ways to manage. We spent lots of time tag-team parenting in the early days, and one of us would often hold H while the other quickly did the jobs, or one of us would take H out and the other would rush around trying to get as much done as possible.


There were similar issues with clothes, especially trousers and shorts with buttons inside to tighten them, so I learned to sew and made everything into elastic waists. Food issues were scary at first, but when a health visitor suggested keeping a food diary over a week and we were able to see that in fact eating nothing but cheese and cherry tomatoes some days and only marmite sandwiches on other days actually worked out to be covering a few food groups at least, so we stopped worrying about that pretty soon into weaning.


I think we naturally fell into a rhythm of Low Arousal at home, even though we didn’t know at the time that that was what we were doing. However, the world became a whole lot more complicated when H had to go to school.


Pre-school had been a challenge and we had never managed to get beyond three morning sessions per week. Even though H was excited to choose their lunch box and we filled it with their favourite food items, the idea of eating in the pre-school environment was just too much and H shut down.


Obviously this did not bode well for full time school, and in fact it was a disaster. From the first week of full days, H struggled to attend every single day. They had to be physically removed from me and would be dragged kicking and screaming in through the doors. Once they escaped and ran out of the school. My one regret is that I took them back that day. I wish I had removed them and never gone back but we did and we continued to take them until they broke.


From the day we removed H from the school system until now we have lived a Low Arousal lifestyle one hundred percent of the time.


Our home education package was built around H’s interests - everything we did was in consultation with H and with their agreement. We offered opportunities but never forced or coerced H to join in. We encouraged and supported H to make planned visits and trips to places they wanted to see including a two-week trip to Scotland, various trips to Wales, the North East of England, and more recently Shetland and the Lake District.


We built in quiet days and days with no demands. We recognised that life is exhausting for H and we needed to make sure that they had enough rest in between activities.


We were criticised by some people for not doing ‘school’ at home, but we knew H was learning and could see them making developmental leaps that hadn’t been made in all the time H was in school.


We didn’t record on paper what our days looked like other than the most basic of timetables, but we took thousands of photographs from everywhere we went and everything we did.

Probably the most important thing H learned during those early months of home education was how to say no! Whilst many school children are measured by their compliance even when complying is agonising for them physically and mentally, by adopting a Low Arousal lifestyle we were able to give H the freedom to say no to things that were too much.


I first heard the term Low Arousal at around the time we removed H from school. When I went to the Autism West Midlands conference, Bo Hejlskov Elvén was speaking about Low Arousal and I realised that what we were doing was actually a thing! I was so happy that other people thought this was a good idea, because it was certainly the right way for us to be.


Over time, I attended events run by Studio 3 and Gareth Morewood. I spoke at Gareth’s Brew Ed about how home education had fitted the Low Arousal model for us, and how we were totally converted to a different way of life. We never make direct demands on H, we live collaboratively and try to make sure that we are equal decision makers, even more so now that H is an adult.


We have learned how to rephrase our communication so that nothing is or appears to be directly demanding. The pressure of demands can make H panic and almost always lead to them being unable to do whatever was being requested. Once embedded, the way we use language became natural to us and now it feels wrong to make direct demands to another person.


H now has three amazing professionals supporting them after five years of pretty much all their support coming from me and their dad.


All of the professionals who work with H are totally on board with Low Arousal and Acceptance and all have built great working relationships with H. In the time H has been working with these three people, there has been a handful of times when H hasn’t been able to go or hasn’t coped with the sessions – the same person who screamed and kicked and had to be carried or coerced into school for years.


Something we have been asked over the years and that I hear from other parents is, “But how will they manage in the real world?”


I don’t know where this ‘real’ world, is but the one we live in is autism-friendly, accepting, and is based around Low Arousal. We struggle with the non-autistic world but we dip in and out as we need to. We try to avoid it as much as possible because it doesn’t really work for us.


I think for me, the most important part of Low Arousal is the improved opportunity to build strong relationships. When no person is more powerful and each individual has the right to say no and for that to be respected, trust grows and fear diminishes. When people are no longer in constant fight, flight, or freeze and feel safe, they can have head space to learn, to grow, and to be happy.'


 

Supporting Young People to Flourish, by Anonymous

'I write as an autistic mother to my autistic child, and also as a teacher from a mainstream background. I fully acknowledge and accept that my perspective is not that of my child, and my experience is not hers. My writing and perspective comes from witnessing and observing her experiences only at this time. However, until my child is able to, and indeed chooses to, share her experience, I hope to advocate for change in how autistic young people are treated, and add to the growing plethora of evidence in support of eradicating restraint and seclusion in our schools.


To understand how the Low Arousal Approach has supported our young person to flourish, it is important to outline briefly our past. Only last year, my daughter (L), experienced great stressors that left her suffering frequent nose bleeds, sickness, and incontinence. Daily tasks such as brushing teeth, dressing and bathing, brushing hair etc were not easily tolerated without experiencing panic and discomfort. L’s eating had become only nibbles of 5 food items, two of those being milkshakes and water. L’s well-being had deteriorated to such an extent that even leaving the family home for her previously favourite enjoyable activities became impossible.


As a family, we reached out to numerous professionals for support, including her school setting and closely linked professionals. Their advice was “push through the trauma,” alongside their advice to “stop cuddling her to sleep” and to remove L’s person of emotional support, which went against our morals and better judgement. The advice was to take control and force L against her will to conform, with demonstrations provided of “how its done.” Due to threats of removal of my child I was in no position to challenge the professionals, however enabling their (in our opinion) abuse, by not challenging this, was not an option.


L’s school was an independent specialist setting that was not only a school setting but offered a care setting for other autistic young persons also. The cost to the Local Authority (in excess of £50,000 for a school placement only) led to the interpretation that the school and its associated professionals were experts and therefore best placed to advise on the well-being of autistic young people such as L. All professionals we approached for support believed this to be true, as opposed to questioning their methods and approach in light of such a large financial gain.


In contrast to data suggesting that restraint occurs primarily in mainstream settings due to lack of autistic and Special Education Needs (SEN) knowledge by staff and other pupils, L’s specialist setting resorted to restraint and restrictive practices as their first and foremost approach, alongside ABA and later PBS. L was exposed to traumatic events, witnessing and experiencing first hand restraint and restrictive practices within her school setting. When challenged, the school excused, minimised, and dismissed the events as acceptable as “her lips didn’t turn blue” when L’s screaming stopped and she went silent mid restraint.


Although we witnessed (and tried to object to and stop) restraint being used on L on multiple occasions, we do not have access to data or reports on each incident of restraint. This is largely due to “no legal obligation on schools to keep record when restraint is used, or even to tell parents about serious incidents of restraint involving force” (Radio 5 Live, 2017: 14.41-14.50 mins). This is further exacerbated by there not being an accepted definite explanation or definition of what restraint is. This was fully exploited by the school to escape any consequences. The result was parental blame with threats to remove my child and, most concerning, a child experiencing trauma on a regular basis, with no support in place.


Studio 3 were the only professionals to offer any support in terms of Low Arousal training for our family with trauma-led advice and approaches. This was life changing: despite being unable to change some external factors, we focused on changing what was within our control. We fought for a new setting using our new knowledge and understanding from the training we had received, alongside support from Studio 3’s contacts and wealth of expertise. In response to all the arguments raised by the current setting’s professionals, we were able to advocate that a different setting using the Low Arousal Approach and in line with LASER training would be key to overcoming any arguments against L leaving their setting. Professionals who don’t resort to restraint or use restrictive practise became a crucial starting point from which to build L’s trust and confidence in others, as any relationship with the previous setting’s staff was beyond repair or salvage due to their behaviour and treatment of L. Without Studio 3’s backing and training, we would not have been successful, let alone found the strength to hope and try.


We found a mainstream school that largely followed the LASER Approach already and offered a Low Arousal Approach as the standard for all pupils. L’s younger sibling was already in attendance, so we had first-hand experience of the new school’s approach in how they had supported L’s sibling. L was able to visit the setting each school day whilst accompanying her sibling to and from this school. On approaching the new school grounds, L was not greeted by numerous large male figures in dark clothing and high vis vests wearing unwelcoming expressions, and nor was she greeted by other over-bearing figures physically transferring pupils from the car park straight into the building. L was not greeted by pupils displaying observable stress signals whilst other staff ran around with walkie talkies. L was not dragged by several members of staff from the vehicle, and left to remain in soiled or wet clothing all day, stained from nose bleeds or vomit and tears. Instead, L was able to play on the playground equipment alongside her sibling and other pupils, which enabled L and indeed all pupils to regulate through proprioceptive activities before even approaching the building or staff. L’s experience within this setting in the very limited time she was present enabled her to observe the new school staff’s pleasantries, open body language, and the interactions between professionals who didn’t use restrictive practices, even with the few pupils who were showing observable signs of upset, worry, and stress. It gave her validation, a glimpse into how life could be for her too, and a realisation of how young people should be treated by professionals, in complete contrast to her traumatic experiences. After observing L within this setting, and communicating with L about her thoughts and feelings with regard to this being her new school setting, it was clear to our family that this was the right decision and way forward.


However, one last hurdle was to be overcome. The new setting had communicated with the old school, and was heavily pressured into believing their statements that L was to remain within their setting and could not be given an opportunity to leave. Thankfully, with expert advice and support from Studio 3’s independent contact, the new setting overturned their decision to deny L a placement in their school. The short snippet of time spent within the proposed school setting allowed us to see the child she could become in the new setting. It also enabled L to hope and gave her the strength to get through each day in the old setting, working towards a start date at the new school and crucially, an end date to her abusive treatment at the hands of the so-called experts.


Fast forward to now and L is thriving. Since the end date, she found the strength to begin horse riding over the summer transition period, and began to build a fantastic trusting relationship with the adults and peers within the riding centre setting. L is now a confident rider and finds regulation, enjoyment and comfort in her horses. Since then, L has become a member of the ballet school with regular dance classes, and a confident piano player with a trusting relationship with her piano teacher. L began full days immediately in the new school in full uniform and participated in all learning activities, much to the surprise of the new school. L made new friendships immediately and accepted invitations to her very first ever friend’s birthday party. Every concern cited by the last setting L has proven wrong. L has begun to form trusting bonds with adults in her new setting despite the trauma she has experienced previously. The new school has remarked on the difference they have observed for themselves between L in the last setting and now, and praise L for her strength, achievements and character. L has disproved every statement from the last setting, to such an extent that she is one of the top achieving pupils in her year, and a valued friend amongst her peers. The professionals now state L is not to be underestimated and reward L with small tokens for her amazing achievements in such a short space of time. L is educating all about being an autistic young person, and how it is entirely possible to thrive within the right mainstream setting.

L’s experience should demonstrate the need to eradicate restraint and restrictive practice, challenge those who do engage in this, and question the financial gain of private settings and the conflict of interest when advising and leading all other professionals with regard to autistic young persons’ well-being and lives.'


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