Some requests for those who interact with my autistic son

Over the course of our first year in school, many people have been charged with the care, education and welfare of my son. There are his classroom teachers, of course, and his permanent one-to-one TA, and other members of staff who deal with him frequently. These people know him well and the vast majority know the suggestions that I am about to make. They work tirelessly to make him feel safe and confident. There are, however, also those who see him a little less frequently – cover teachers, office staff, dinner ladies, agency TAs, professionals from the LEA and visitors from elsewhere. There are also those who may meet him in other situations – doctors, nurses, members of the public. These individuals do not always have time to get to know my son.

The suggestions I am about to make are a mixture of things that may be specific to my son, and many which could be adapted for other autistic children and young adults within the education system and beyond. Hopefully, even if the majority of those reading never meet my son, these will provide some insight and encourage others to be open-minded and non-judgemental when dealing with autistic individuals in all walks of life.

Some requests for those who interact with my autistic son:

1. Do not make him look at you when you speak. There are other ways to check that he is paying attention. Say “I need to know that you are listening. Can you say ‘yes’ to show me that you are?”
2. Do not stop him from stimming unless he is endangering himself or others. If stims are noisy and affecting those around him, offer some quieter alternatives or give him a place to stim for a short time before returning.
3. Do not lie. Do not even stretch the truth – even if he asks a difficult question, even if you are not sure what to say. If he asks you if there is a God or where babies come from, never give him an analogy or tell him things are definite when they are not. My son believes you. He believes all he hears and his memory is unfaltering, his dedication to the facts he knows is unswerving. The things he learns from you are remembered and taken as gospel. If we have to tell him something different later on, you cannot imagine the heartache and pain it may cause. Say “Many people believe there is a God. Some do not. I believe/do not believe but you will have to decide for yourself when you are bigger.” Say “There is a special way to make a baby but mummies and daddies have to be the ones to tell you that. You should ask mummy or daddy when you get home.”
4. Be literal. Do not make empty threats or false allegations, even in jest. Never say that you will leave someone behind or that you will throw things away if you do not mean it. Be careful when you say you will “keep an eye on it” or that “the school will be doing a sponsored walk.” (He will think you mean the building)

5. Do not make assumptions about him. Do not presume that because he has an autism diagnosis, an EHCP and full-time one-to-one support that he is not fiercely intelligent. Do not assume that his behaviour is challenging, that he may be violent.
6. Do not assume that the time you spend with him will be unpleasant or difficult – he is a joy to be around.
7. Do not believe that he lacks emotion, lacks empathy, lacks the ability to form bonds and connect with others. His emotions run deeply, his loyalty to his friends and passions is steadfast. He is sensitive and vulnerable.
8. Do not assume that he lacks affection. He seeks my physical comfort often, climbing into my lap and stroking my arm. He loves hugs and holding hands but dislikes kisses – like so many little boys, everywhere.
9. Do not speak in front of him as if he cannot hear. He often gives the impression that he is not listening – but he is. Do not take it for granted that he will not understand most of what you are saying. His understanding can be excellent.
10. Never say something will happen if there is even a chance that it may not. Phrase what you say carefully.
11. If he gets extremely distressed, if he is screaming or shouting or inconsolable, your best reaction is to try to make him laugh. Threats, stern words, sanctions – they do not work  – or they work temporarily and cause more anxiety and a worse reaction next time. He loves word games and puns and jokes. Muddle your words and make an exaggerated show of how silly and wrong your mistake was – you will have him smiling, and more willing to comply, in no time.
12. Listen to him. He has a stammer and language processing difficulties – sometimes takes a long time for him to finish a sentence. Never finish it for him or make him feel like you are bored – that you have stopped listening. His imagination is vivid and dynamic. His ideas are full of humour and innovation. It is worth the wait to hear him, I promise.
13. Remember that it takes a huge effort for him to do some things that others do without thinking. He may seem to lack resilience because ‘easy’ things take so much effort –  but he is brave and tenacious.
14. Praise him. He loves to do well. He loves to please. He loves to share his passions and know his ideas are interesting to others. He will trot and stim, delighting in shared wonder, if you will only let him.
15. Forgive him if he does not respond to you.
16. Be kind. Open up your heart and mind and let go of judgement. You may feel uncomfortable because you do not understand some of his reactions and behaviours, but you do not have to understand to accept and respect him.

Thank you.