Part one (of many)
Parents and schools do not always agree about the need for autism assessment. Here are some very common situations that often happen and make it difficult for parents to know what to do:
1. School are pushing us to agree to a referral for autism assessment, but we do not share their concerns. They say that they see a lot of autistic features, we do not see any. Can we refuse permission for referral?
The short answer to this question is yes. You do not have to consent to referral if you think it is unnecessary and it won’t be helpful. However, it would be helpful to have a meeting with school, and any professionals who support your child, e.g., occupational therapist, speech & language therapist, to discuss school’s concerns, and to learn more about why they think your child could be autistic.
Many children present differently in different settings. Home is familiar, comfortable, predictable, and safe, whereas school involves more uncertainty, it is noisier and less predictable, and there are more demands and expectations. Autistic differences only become difficulties when the environment is hard to manage, e.g., when there is a lot of uncertainty and children are unsure what they have to do, when there is too much language and not enough time to process it, when the lights are very bright, and it is noisy. The environment might be much easier to manage at home, you might adapt things without even realising that you do this, and the conditions might be much easier for your child than when they are at school.
If your child is old enough, it might be helpful to ask them about their experiences at school and how it is different to home. It is important to give your child a voice and learn more about what they are thinking and feeling to try to understand why school see such different behaviours. Discrepancies between home and school are not unusual and this is fairly common with autistic children. Autistic features are not obvious all the time, they are affected by the child’s surroundings and the interface between different ways of processing information i.e., autistic and non-autistic. As a result, they can be obvious in some situations and not in others.
2. We agree with school that our son might have some autistic features, but we don’t see the point of formal diagnosis. It will label him and there is still a stigma about being autistic. We can’t see any good reasons for assessment.
Deciding whether to get a formal diagnosis or not is a deeply personal decision, and one that no one makes lightly. There is a stigma around any difference, not just neurodivergence, sadly and this obviously makes it harder for parents. However, whatever our personal views about diagnosis are, the most important person in all decision making is the child. If school raise the subject of assessment, presumably they are finding certain things hard and want more funding, support, knowledge and understanding about how to help your son.
It would be helpful to have a meeting with school to find out what they think the benefits of diagnosis would be to your son and why they want to make a referral for assessment. Another thing that would be helpful is to find out what they are finding hard and sharing your knowledge and understanding of your son to help them. You probably understand his responses to situations in more depth than school do, and you can share this along with what you do to help him manage situations that are stressful. Work together with them as a team, sharing your expertise and think together about how what helps at home can translate to school.
Another angle to approach this from, is to talk to school about raising awareness of different neurotypes, how different our brains are and that this is natural variation in the human race that has always been part of being human and always will be. Increasing understanding promotes inclusion and acceptance of difference, which could have a powerful impact on everyone’s responses to each other and the way everyone manages differences. Edinburgh university have produced very interesting resources to do this, which you can see at this link:
https://salvesen-research.ed.ac.uk/leans
