Five years old –  a happy, healthy neurodivergent child

The fifth anniversary of the Autistic Girls Network group on the 17th December has given me cause to reflect upon my own child and their experience of being neurodivergent.

At the age of 5, they had been at school for 3 weeks.

They were extremely excited to be going to school – to follow their big sibling, and all that they understood went with it.

Underneath they were extremely anxious.

But we as parents, and they themselves, didn’t realise that school for an undiagnosed but healthy and happy small neurodivergent individual can be where differences start to appear, labels start to emerge, and real issues can become embedded.

There were no ‘concerns’. But what if we replaced the word Concern with ‘Wonder’. I wonder if there is something different going on for this child alongside their peers? I wonder if they are experiencing things in a different way? I wonder if they might be neurodivergent?

Our Autumn-born little girl was gorgeously wonderfully individual right from birth. She slept through from early on, but once that routine was broken by illness, never slept well again. She hated travelling backwards in the car, but with a safe transitional object was really happy to travel to other places. She processed fevers really badly. She smiled early and often. She fully engaged with people she loved. She was unique in her approaches to play and language. She was totally different to her older sibling.

She was peaceful and brilliantly ‘behaved’, never having the tantrums that our eldest displayed from toddlerhood. She was well-organised, but incredibly messy, knowing at an instant where everything was – and it was usually packed in a small bag with a plethora of other seemingly unrelated items – a horse, a shoe, a lip balm, two lego bricks, a tissue and a tiara.

She was a wonderful physical risk taker, but never a rule breaker – climbing trees and being covered in mud. Often dressed as a princess. She danced with abandon. She sang. She watched her favourite episode of her favourite programme over and over again. She made up a whole new language aged 4 and taught it to us.

She played imaginatively, and played self-sufficiently. Her toys had the most creative names. She was hugely empathetic and noticed friends’ moods and feelings immediately and felt them strongly.  

She always ate very selectively and repetitively, but well. Always plain and always beige, but from all the food groups.

I worked part-time as a parent, and starting at the different nurseries was a big barrier. When settled things went well – that happened at three different settings.

So, sending her to school, where she wanted to go, was a wrench, but a joy to see her so excited.

The first few days were incredibly traumatic. She had friends from ‘real life’ in her class – both boys – and would play with them, but others were a struggle. Playtime with the other classes was extremely difficult. At the end of the first week, she said that as she had now been to school, she wanted to ‘quit and get a job’.

The reception teacher, who was lovely, said she was quiet and shy but ever so clever. And as she was ‘practically perfect in every way’ she was given latitude to participate or not in the Reception-ey activities.

In the nativity, she got a lead role, but was in total meltdown by the end, and I had to take her home.

So there were many, many signs. But with intuitive adaptation by the class teacher, she eventually settled. Supported to find her own way, and with the lighter touch of the Early Years Curriculum, she found her own way once she knew how to navigate the people and spaces and places, and knew she would be safe.

Schools are required to track academic and even social attainment from an incredibly young age, but these ‘tests’ do not flag interaction and social communication differences. I can see how she was ‘missed’ at age 5. And there doesn’t seem to be any joined-up record keeping – outside of school there was one solitary Health Visitor visit at approximately age one. So, a child who struggled with new unknown, unfamiliar environments, with big eating differences, who didn’t sleep, who experienced big difficulties with transitions, who played very differently, who felt feelings very strongly and profoundly, who spoke only once she had mastered the entire language and then used sentences and vocabulary that far exceeded her chronological age, who preferred the contact of adults and older kids over her peers, was not noted anywhere. These are key indicators that a child may be autistic and are ‘Keeping it all Inside’.

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At the end of reception, the classes were mixed (it was a big school) and our child was removed from her friends as she was ’over dependent on them’. Her reaction was intense and powerful. A school ‘accepter’ became a school ‘refuser’ – her safety net had gone. Year 1 was only successful because she again, by chance had a brilliant, wonderful, intuitive class teacher who allowed her to come in 30 minutes before the other children, and have ‘important jobs’ to get her settled.

Some topics covered in the curriculum had profound impacts – The Great Fire of London created a prolonged and pathological fear which lasted for years.

We were remarkably lucky with Primary School by accident, and by our kid having exceptional individual teachers. And because the Primary phase has far more latitude to adapt than Secondary. There were difficulties all the way through though. School avoidance, stomach pains, headaches, meltdowns (as we now know them to be), adaptations made because our child was clearly hurting rather than hurting others. She never made any waves on any ‘radars’. She was noted as gifted and talented. She was nurtured.

And her older brother, a strong-willed, big, loud boy, was ‘pinged’ a few times as having additional needs. But never our peaceful, perhaps too compliant, daughter.

Years 5 and 6 were a huge struggle. Bullying by other girls led to the start of food avoidance. The school intervened and acted lovingly and accordingly, but the damage was already embedded.

And the transition to secondary school was a disaster. Fundamental. Catastrophic. Because there were no notes, not being on any ‘registers’, no observations of her differences, and we were blamed. She was blamed. For being a victim, for not having resilience, for something going on at home. For being shy. For being anxious. For not trying hard enough. For not pushing through. For not speaking out.  They had never had this problem with a girl before. And so, it went on. Perhaps ‘reasons’ others have heard. And her eventual formal diagnoses of Autism, ADHD with the co-occurring but exceptionally dangerous, OCD, PTSD, GAD, potential ARFID and a ‘demand avoid profile’ were all laid bare.

It could have been so different.

What if we changed ‘monitoring’ of children to look for neurodivergence? What if we had and she had been made aware that there were differences, that she was not damaged, or failing, or wrong, but was instead simply a brilliant wonderful neurodivergent youngster – that the differences were just that? That we didn’t require a child to ‘break’ before help could be sought. Perhaps most importantly, that ‘autism’ is not a ‘label, and not a dirty word.

If someone had told us that she was possibly autistic – as they did when she was hospitalised aged 12 – I would have been shocked. As I was. It was not something that I had ever considered, because I ‘knew’ what autism looked like, and it simply wasn’t a girl. But that light bulb moment meant that I could find autistic folk to help guide our steps forward. And she could see that being autistic was who she was. And it wasn’t a bad thing.

If someone had wondered out loud if she may also have ADHD, I could have explored what that meant, and might have recognised it in myself sooner and been able to say ‘Guess what, I think I am too’.

We simply do not have systems – educational or health – that recognise healthy, happy neurodivergent youngsters and help create pathways to ensure that they stay that way. We do not join the dots and notice how vital this self-knowledge is. The systems fragment the ‘parts’ of neurodivergence, and force crises before support is in place. They put parents into conflict with ‘agencies’ when they are potentially dealing with an actively suicidal child. It is all seemingly about money, and not a child in a crisis caused by systems.

Part of this is educational policy – behaviour policies, forced curriculum, the decimation of pastoral support funding, the super size of schools, the removal of easy access to Educational Psychologists. Part of this is CAMHS and mental health funding – a youngster has to be utterly broken and reacting dangerously before they are even able to access waiting lists which are years long.

And part of this seems to be an attitude that difference is bad. Our kids feel this profoundly, that they are failing to be the ‘same’ as neurotypical kids in a neurotypical-designed world. In fact, ‘interventions’ and support are designed to be accessed by neurotypical children, and in many cases prevent those who are neurodivergent from receiving help that is appropriate.

So as my child starts to thrive again, in their late teens, I reflect back on what we could have known at aged 5.

We could have acknowledged that our (still) brilliant, wonderful, loving, kind, caring, smart, intelligent kid was neurodivergent, and helped them see their strengths and themself. We could have advocated with knowledge of what is harmful, and what might be helpful. We could have helped them navigate the rocky road of puberty and friendship from a place of self-knowledge and safety. We would have chosen a different secondary school for sure (2000 kids is not an ideal space for a child with hyperacusis and AuDHD)

Autistic Girls Network has been a safe haven for me. A place to ask for help and advice from others, especially the autistic members. But more importantly, it is a group challenging the very practices and understandings that hamper and hinder autistic folk.

By a longterm member of the Autistic Girls Network Group which you can find here.  If you would like to donate to AGN to help support us in supporting young autistic people you can do so here via Just Giving.

Holding it Together with Your Autistic Young Person Through Exam Times

It’s that time of year again when GCSEs and A levels loom closely (Highers have already happened for 2022 if you’re seeing this another time), and anxiety levels of teens rise. As we know, our autistic young people carry high levels of anxiety much of the time, being so often in environments that don’t support their needs, so all of the extra pressure right now is not helpful. So how can we help to keep things on a more even keel?

Make sure suitable access arrangements are in place

Access arrangements are reasonable adjustments made so that exam conditions are more equitable for pupils that need them. The most common are extra time, use of a laptop, rest breaks or provision of a reader or scribe (though there are restrictions on these in subjects like English), but they must be accommodations that are regularly used in pupils’ day to day lessons. There is a legal obligation for authorities to make these reasonable adjustments contained in the Equality Act 2010. Pupils with strong sensory needs or a difficulty with focus may also need to sit the exam in a quiet room, or one with a small group or even with only them and the invigilator. If they are in the main room with everyone else, there may be positions preferable for them such as at the back, so that they aren’t worried everyone is looking at them, or near the door so that they can leave quickly and quietly if necessary. It may also be beneficial for them to have the same seat in each exam. While these arrangements are more complicated to administer, they are all possible.

For students without an EHCP (education, health and care plan), the rules on 25% extra time have become more complicated and involve proving a difficulty in two types of cognitive processing difficulties. This means more preparation for the school to put arrangements into place, so if you are putting off a conversation, don’t!

Make sure they are aware of what’s going to happen

Just as for other unusual events, it’s important that your autistic young person understands exactly what’s going to happen, where, why and with whom. Ideally school would have a picture of the exam room from last year so that pupils can visualise what the room will look like with all those desks spaced out, and tell them what the invigilators will do, how they will be able to keep track of time and what happens if they need the toilet or in an emergency.

Make sure exam staff know about your young person’s needs

Your young person may have specific needs in an exam – for example, if they have difficulty with focus and are obviously zoned out they may need an invigilator to come close or touch the desk or even their shoulder gently (and without startling them of course) to bring them back from their zone-out. This should be discussed with your young person beforehand and the method agreed upon so that they are aware of what’s going to happen.

Likewise if your young person needs extra ‘tools’ to get through the exam, these also need to be discussed with school beforehand to make sure they are acceptable and that they won’t cause a problem in the exam. For example, phones won’t be allowed even if they are generally used for emotional regulation, because obviously they could be used to cheat, and there is the same issue with bluetooth, noise-cancelling headphones and a music playlist from a phone. But you may be able to use an iPod, ear plugs or of course ear defenders which don’t play music. The important thing is to get these tools agreed in advance.

Make sure Exam Access Arrangements (EAAs) are made in good time

While adjustments like extra time are relatively easy to sort, others such as needing modified exam papers (in large letters, dyslexia font or in braille for example) must be arranged well in advance. Don’t assume that this will all be arranged by the school SENCO – be proactive and make sure it’s happening, even if it’s written into your child’s EHCP. Mock exams can be a good test of what is needed, but even mocks need planning and if a ‘big’ adjustment is needed such as a separate room, this all has to be built into the school timetableing.

Schools are official exam centres and are inspected, so everything must be above board and they can’t change all the rules for you, however much they want to!

EEAs should not be confused with Special Considerations, which are an adjustment which is requested after the exam has been completed if the young person has undergone a difficult time such as a bereavement or an accident.

What other ways can teachers support their autistic pupils in the run up to exams?

Keep things as low pressure as possible. If in mainstream, with 10 or more different subject teachers piling on this pressure this is likely to cause high anxiety in most pupils, and at least some of your autistic pupils will probably be highly empathetic and strongly affected by the high emotions of their peers.

Think about what you are saying to the whole class. Don’t make blanket statements if they don’t apply to everyone, because your autistic pupils may well take what you say literally. These exams do not define the rest of their lives. Emphasise that we don’t know what the results will be until the Summer, so don’t make assumptions now. Pupils only need to do the best they can on the day.

Give sensible direction for revision. Short bursts with a movement break will probably work best for everyone, but breaks are vital for autistic pupils.

Keep classes calm and gentle. If we think of the ‘coke bottle effect’, your pupils are already fizzing near the top of the bottle and being shouted at or feeling told off can make your autistic pupils’ bubbles just explode right out.

Neurodivergent pupils may need extra instruction on what revision is and how to revise – break your explanation down into small steps, and of course individualise your advice depending on how your pupil learns best. It’s important too to stress that they don’t need to over-revise: perfectionism can mean they feel they need to read everything.

Minimise waiting time in big exam halls for your autistic pupils – maybe they can enter last if that’s what they would rather do.

Make sure pupils know what will happen around the exams as well as in them – what happens when they are finished? What happens in between if they have two exams on the same day? How will they know where they are supposed to be and when? Take away as much of that worry as you can.

Pupils with executive function difficulties may struggle to process all the extra actions needed for exam days so a gentle touch base with them the day before and a checklist of what is helpful to bring (and what’s not allowed) will cut down on some stress. Make sure they know where they are going, where they are going to sit and what to expect.

It’s even more important for autistic pupils to be armed with the knowledge on how to prioritise questions according to marks, because it may take them longer to process the questions. It will be helpful to sit with them and work out a way that’s good for them to skim the paper first and mark which questions need more time spent on them.

Find a way that works for them on how to transition from not revising to revising – getting started can be difficult, particularly for subjects they’re not interested in.

Check in with your autistic pupils on how they are feeling (but don’t say that – nothing worse than trying to answer “How do you feel?” for an autistic person!) and try to figure out what their worries are. It may be something very solvable, and it may be easier for them to write their worries or draw them rather than articulate them to you in speech. Remind them to use their (hopefully) proven strategies for stress and emotional regulation.

How can you as a parent support your autistic young person before exams?

Reduce demands. All demands. 

Think about what counts as a demand – obligations, expectations, choices, instructions, laws, rules, timetables, needs, signs, questions, promises, prompts, chores, requests.

Think about how many of those apply at the moment, around revision and exams. Those are unavoidable if your young person wants qualifications, but as a parent it’s in your power to remove all the demands which aren’t vital right now. The less battered by demands they feel, the better.

Be honest about exams, and qualifications, and life. Tell your young person they work very well for some paths, but not everybody needs to go down those paths. Strike a balance between doing their best and realising that the world won’t end – for them or any of their peers – if they don’t get all their GCSEs.

Without implying you think they might fail, drop into the conversation that it’s perfectly possible to retake Maths and English GCSEs – the only ones which really matter in terms of doing what you want to do – at a later date.

Make sure your young person knows that whatever the results, it’s not a reflection on them and it’s not part of their identity. Exam results test what can be recalled on one part of a day in one system which is set up to the disadvantage of neurodivergent young people. They are a stepping stone on a path, but you can take a different path.

Go on a drive with them and have a talk about what’s bothering them most at the moment. Conversations are much better where no eye contact needs to be made, and the vestibular movement of driving is likely to be a good form of soothing regulation. Don’t immediately try to fix everything that comes up, but talk about possible solutions and strategies with them. Most of all, listen, and validate what they are feeling. If some of the feelings are overly negative and don’t feel justified, offer facts to illustrate that actually this negative viewpoint might be inaccurate, but don’t labour this point if it seems to cause distress. 

If your child is a perfectionist – a pretty common trait – it can be paralysing to think that you’ll get anything less than a perfect score. This is when you need to listen, validate but make sure they don’t revise all the time or avoid chillouts. Relaxation and environments where anxiety is reduced are really important, and just as much part of healthy exam preparation as revision. It doesn’t matter how much revision you do if you’re too anxious to actually sit the exam.

If your young person has difficulty attending school at all, it’s even more important to keep everything low key. Your job now is to keep the home a calm, safe space, not to nag about revision. Adding pressure will not be productive. Consider the best chance of enabling them to attend on exam days and aim for that ideal.

If heightened anxiety makes your young person restrict their eating, don’t push any food other than the food which feels safe to them. Over the exam period, provide their favourite easy foods and snacks, and no surprises. Leave snacks around so that eating is less demanding.

If heightened anxiety makes the sensory aspect of clothing more difficult, think about your laundry schedule and don’t wash their favourite pair of jeans/ their school trousers the day before an exam. Make sure they have their most comfortable clothing available so that sensory difficulties don’t make the morning worse.

Your young person might be prone to catastrophising – when they put the worst possible slant on what might happen, and this can seem very negative. But make sure that you’re not doing that too. You’re worried about them at this anxious time, but they might just as well surprise you.

Plan after-exam treats, but only ones your young person will like or have capacity for after a long, stressful, exhausting day. 

And cross each exam off as it’s done – one step closer to Summer freedom.

Some tips for a good transition from primary to secondary school for autistic pupils

It’s almost that time of year again, when we see the mass migration of a whole year group to secondary school. There are almost 818,000 11 year olds in the UK, and while they won’t all be moving schools, allowing for some middle schools and home education, many of them will be. Naturally, it’s an anxious time for pupils and families.

70% of autistic pupils are in mainstream schools according to government figures1, though the statistics are almost certainly higher since not all autistic people are diagnosed while they are at school. In the UK, transition to secondary school takes place when the pupil is 11 years old, moving up to what is termed Year 7 at school. The government has designated that pupils with Special Educational Needs and Disabilities (SEND) should receive additional preparation for school transition2, but there is no national framework for what should happen, either for pupils with SEND or without. Research has shown that particular barriers to a successful transition to secondary school are bullying and not having support from friends and peers2, and both of these are particular issues for autistic pupils.

Autistic Girls Network and CEO Cathy Wassell ran a survey in July 2021 as part of her MEd in Autism (Children) at University of Birmingham. It asked “What are the experiences of transition to mainstream secondary school for autistic children?” In all 17 families (parents and their children) took part in a fairly extensive survey which looked into their experiences of transition. Unlike all other studies of secondary transition for autistic pupils, it was not necessary to have been diagnosed autistic while at primary school – in fact only 8 of the 17 had been diagnosed while at primary school. 13 of the 17 pupils were girls, while 4 were boys (the survey was open to non-binary and trans pupils but none responded as such) – this also differentiated the study from others in the same field, where the majority of respondents were overwhelmingly male. Our hypothesis was that the pupils who were already diagnosed as autistic at primary school would have a more happy, successful transition than those who weren’t diagnosed until secondary school – but the data did not support that hypothesis. Instead, both our study and a review of the relevant academic literature in this area pointed to individual, personalised planning and preparation by both primary and secondary schools as the main factors in a successful transition, along with friendships and relationships supporting the pupil.

Some of the things that autistic pupils find difficult about school transition are:

  • Moving from a small primary to a large secondary school
  • Moving around crowded corridors between classes
  • Large dining halls – smell, noise, too many people
  • A lack of structure at break and lunch times
  • Social interaction with many unknown pupils
  • Many teachers instead of one class teacher
  • Strict school rules and detention
  • More complex work and higher expectations around speed of processing
  • More unpredictable class subjects like science or DT where pupils might be moving around
  • More independent working expected without enough organisational help for someone with executive functioning difficulties
  • Loss of their supportive peer network from a class that has known them since starting school

Given these points, and that secondary transition is a source of anxiety for all pupils but intensely so for autistic pupils, it makes sense that preparation, planning and getting to know the school and teachers before a September start is the best solution for a successful transition. Studies in the literature showed that school open days were not enough3, that extra visits were needed and that autistic pupils were much more likely to have a successful transition if they knew what was going to be happening, where and with who. Although transition might be understood as a single point in time – the first day of the new school – in fact the transition process should start at least 6 months earlier than that and for autistic pupils at least, it won’t stop until perhaps the beginning of Year 84

Both the subject literature and our own survey highlighted the importance of friendships and relationships around this difficult time. Our survey in 2020 found that the period most autistic young people fell into crisis after transition to secondary school was by the February half term of Year 7, however those who moved up to ‘big school’ cushioned by friends seem to manage for longer. All young people need friends and peer support, but for autistic young people there is a compelling need to ‘fit in’, since many feel that they don’t fit in. In order to fit in, they need to feel as if they belong, and to do this they need friends, the support of their peers and the acceptance of at least some of their teachers5. All of these relationships are very important in transition. While a good relationship with at least one teacher is important, we need to remember that to lessen school anxiety, school needs to be a safe space, and that means young people need to feel safe there with all teachers. It’s all too easy for a poor understanding of autism to lead to a misinterpretation of reactions.

School-parent co-production was also found to be important in the literature review – schools who worked closely with parents and pupils to really get to know them and listened to them facilitated a much more successful transition. It also helps to recognise that all autistic pupils are individuals and a ‘one size fits all’ policy won’t work.6 As such, autistic pupils need to be involved in their transition planning. In our survey, all 17 pupils were reported as being more anxious than their peers, which would suggest that all 17 should have had individualised transition plans, but in fact only 6 were offered a different plan to their peers (3 who were diagnosed at primary school, and 3 who weren’t). At Autistic Girls 

Network we also ran a survey on our Twitter page in August 2021, and only half of respondents had been offered a different transition to peers. Only 3 pupils had what they considered to be a successful transition, and these were pupils at schools who put in very detailed, individualised plans for them. 9 of our survey respondents did not receive the support which had been promised to them, differentiated or not. 8 of our respondents had been refused referral for an autism assessment, including the 2 girls who were diagnosed at age 17, both of whom had a very difficult and distressing school career. This is why recognising autistic masking, and how differently girls (and some boys and non binary young people) can present, is vital for teachers in both primary and secondary school.

These were some of the reasons given to our respondents for a refusal to refer for an autism assessment:

Tips to make a successful transition more likely:

  • Transition is a process that needs to start well in advance of September, and continue throughout Year 7
  • Transition support plans should be needs-based and individualised
  • The autistic pupil needs to become as familiar as possible with their new school and teachers
  • Moving up to school with friends can provide insulation
  • Having teachers that seem to (even if they actually don’t!) understand the way you experience the world is very helpful and soothing
  • Being listened to and involved in the transition planning is important
  • A low sensory arousal environment is needed for autistic pupils
  • Schools need to be ready to make reasonable adjustments as soon as they become aware of a pupil’s needs – on a case by case basis
  • Given that Year 7 is often the school year where autistic masking breaks down and pupils go into crisis, teachers need to be aware of signs to recognise autism and what crisis may look like

Examples of possible elements in a transition plan:

  • A colour coded map of the school, a timetable and pictures or videos of processes such as getting lunch can all help
  • Summer school or activity clubs at the school before starting
  • A buddy system involving older pupils – well supervised to make sure there is no bullying
  • Send a scrapbook of photos
  • A keyworker for extra school visits
  • A visit to the dining hall to eat lunch with a support group prior to starting
  • A support group
  • Meeting the SENCO in advance and learning about chill-out spaces
  • Break time support
  • Whole school awareness to facilitate peer support
  • Interest clubs to facilitate social mixing

There will be many more elements school could add which would benefit individual pupils – if you’ve come across some good ones, let us know!

1 Department for Education (DfE) (2014). Special Educational Needs and Disability Code of Practice: 0–25 Years. London: Department for Education.

2 Evangelou, M., Taggart, B., Sylva, K., Melhuish, E., Sammons, P. & Siraj-Blatchford, I. (2008). ‘What makes a successful transition from primary to secondary school?’. Nottingham, United Kingdom: Department for Children Schools and Families.

3 Tobin, H., Staunton, S., Mandt, W., Skuse, D., Hellreigel, J., Baykaner, O., Anderson, S. & Murin, M. (2012), ‘A qualitative examination of parental experiences of the transition to mainstream secondary school for children with an autism spectrum disorder’ Educational & Child Psychology, Vol. 29 No. 1

Richter, M., Popa-Roch, M. & Clément, C. (2019) ‘Successful Transition From Primary to Secondary School for Students With Autism Spectrum Disorder: A Systematic Literature Review’, Journal of Research in Childhood Education, 33:3, 382-398

5 Coffey, A. (2013) ‘Relationships: The key to successful transition from primary to secondary school?’, Improving Schools, 16(3), pp. 261–271. doi: 10.1177/1365480213505181.6 Bagnall, C., Fox, C. & Skipper, Y. (2021) ‘What emotional-centred challenges do children attending special schools face over primary–secondary school transition?’ Journal of Research in Special Educational Needs, Volume 21, Issue 2, pp 61-184.

Cathy Wassell is CEO of Autistic Girls Network, author, Masters student and proud parent of a fully neurodivergent family.