We asked adults with autism/ADHD and parents of children with autism/ADHD what's needed in school. This post describes some themes that appeared in the written responses from 78 people. This is a simplified translation of the original Swedish post.
Autistic people: For purely editorial reasons, person-first language is occasionally used in this post. It's because we write about both autism and ADHD, and identity-first language can't be used for ADHD (as far as we know!). We hope you understand!
--- Author: Kajsa Igelström ---
1. See me
An thunderous "PLEASE SEE ME!" echoed throughout the responses. It's incredibly important to be accepted as a unique individual, and feel that you're okay just the way you are.
"Quiet girls" and others who don't make much noise in the classroom are especially vulnerable. Girls who don't act out can get delayed diagnosis of both autism and ADHD. One suggestion from participants was that teachers could try to verify that quiet children have understood the instructions. Another suggestion was to actively look for kids who internalize stress, and try to understand what's going on. Simply asking the child how they're doing can be a first step in many cases.
Some participants said that they wished that focus could be moved away from superficial behavioral issues and directed at the underlying problems. A feeling of guilt had followed several participants all the way into adulthood. Sadly, some parents indicated that this is still a problem - that they and the child were blamed for the child's challenges. Adults said that some factors that would have helped them were an early diagnosis, and in some cases ADHD medication.
Parents also wished they could be listened to and seen as a potential source of knowledge, instead of being regarded as "annoying parents". So, in summary, the "annoying kids" may be trying to express their needs, and "annoying parents" may be a valuable resource. And the quiet, frightened children may have things to say.
2. We're all unique
Several adults with diagnoses discussed the negative impact of the narrow expectations of what "normal function" means, and of social norms of how boys and girls should behave. Adults wished that their unique behaviors or uneven performance profiles would have been met with acceptance.
Some kids wanted to be alone between classes and didn't appreciate teachers' attempts to help them become socially included. Others desperately wanted to interact with their classmates but got to sit in a separate room to reduce sensory inputs. Some did best in special schools or small "Asperger classes" (the latter is probably a Swedish thing), and others were happiest in a mainstream school. Both unusually talented kids and those with greater academic challenges wanted to have their needs met in terms of stimulation, encouragement and adaptations. Schools that in some way focused on individual qualities were praised by parents, but getting access to them had in several cases required relocation of the whole family to a new town.
We can only speculate which factors make certain children do better in certain schools. We understand that chronic stress is a huge problem for teachers, and that a lack of resources can cause feelings of insufficiency. Our guess is that a complicated combination of teachers' well-being, work environment, and education, the school's resources and environment, and the communication between parents and teachers, all contribute to whether or not children with autism/ADHD perform well and feel safe and happy in school.
3. Give me hope
Several adults said that they had been told by teachers that they had no future unless they graduated. We heard stories about how this had resulted in a fundamental feeling of hopelessness, or an unhealthy pressure to perform. Even if there are good intentions behind such comments, it's important to realize that the effect can be destructive, especially for children with a "literal" thinking style.
When you're a kid, it feels like school represents reality. The concept to hang in there until you emerge on the other side can be difficult to grasp, especially when there are challenges with abstract thinking or attentional function. To not be challenged, to be too challenged, to be bullied, to feel invisible... All experiences at this age contribute majorly to the child's experience of reality, as the developing brain is extremely plastic and receptive.
Participants stressed how incredibly important is is for children to be encouraged in different ways, and to strengthen the good qualities - academic or personal. See the strengths and strengthen them. See the weaknesses and stimulate development.
4. Give me peace and quiet
Many individuals described the school years as a phase of constant stress and anxiety. Especially when adolescence approached, depressions, sleep disorders, and other manifestations of stress started to emerge. We heard similar stories from parents. It can become a vicious circle. The stress makes school harder, and the challenges at school increase the stress.
When your brain is different, school can be extremely draining. It is not just the school work that requires energy, it's almost all components of the day. The background noise, the breaks between classes, the lunch situation, not knowing what'll happen next... Even going to the bathroom can be stressful for some kids. In addition to being bullied, many kids had motor problems (a common symptom in autism and ADHD). This made physical education classes and anything that required hand coordination (e.g. writing) difficult and extra stressful.
In addition to environmental adaptions like minimizing sensory inputs, participants suggested shorter lessons, more frequent breaks, and shorter days. Exhaustion caused by the demands at school was a common topic, and parents even described burnout in their children.
5. Give me clarity and predictability
This topic was brought up by the majority of both adults with diagnoses and parents, and it was relevant in both autism and ADHD. It's not particularly surprising, but the needs were not satisfied in many cases.
Detail-oriented thinking, concentration difficulties, and problems with unpredictable events are some of the challenges that cause an increased need for clarity. Breaks and physical education classes were mentioned as especially challenging situations due to fuzzy rules and undefined expectations for how to behave.
The participant suggested specific solutions, such as preparation before any deviation from the usual timetable, having a detailed and clear timetable, and implementing a greater degree of feedback from teachers about how well the child has understood the instructions. Autistic individuals often found instructions and questions very unclear, and parents described stressful situations when homework had to be deciphered at home. A need for step-by-step instructions and in many cases a preference for written information were mentioned, especially by adults with own diagnoses.
Improved continuity was suggested by some, in particular by having their own bench in the classroom, a home classroom and the same teachers. Further, there was a need for more reliable handover between teachers/schools whenever the child switched grades or teachers. Parents experienced that everything fell apart whenever the child's context changed.
6. Use existing knowledge
Finally, it was interesting to see how much weight was put on whether one had been lucky or unlucky. The fact that changing schools can save a child's wellbeing and performance shows that existing knowledge is not always being used, or that it is not spread to all schools and teachers. It is important to examine that phenomenon, because in theory there is a solution. How can we improve the use of existing knowledge in all schools? It is also true that even the experts don't understand the huge variability and how we can help all kids to get the support they need at school. There is clearly much work to be done!