Navigating new group experiences with your autistic young person

My autistic/ADHD young person and I used to be serial ‘once only’ visitors to countless groups that claimed to be inclusive and welcoming. We tried youth groups, clubs of various kinds, outdoor activity groups, hobby and interest groups – there’s not much we didn’t try. To be fair, there was sometimes a second visit but often only after a lot of conversation and with the clear agreement there would be no third chances if nothing improved.

If you’re parenting an autistic young person and familiar with the kind of experience I’m talking about, you’ll also know the emotional cycle that accompanies it. It might begin hopefully with a flurry of excitement as you and/or your young person discover something they might be open to trying. The possibility that ‘this could work’ can lift spirits, at least for a moment. As a parent you may allow yourself to imagine what it might be like if this person/group of people could see and understand your young person and their needs, make them feel genuinely welcomed, wanted and appreciated for who they are.

This moment of hope is often followed by a less welcome feeling of anxiety that builds as the first visit draws nearer. If you’re good at managing your own emotions, you won’t let it show and you’ll be calm and practical as you support your young person with their anxious feelings. However, underneath that calm exterior you’ll probably be asking yourself the same old questions. What happens if it doesn’t work out? Will it be a disaster, a traumatic experience or ‘just’ a bitter disappointment? How will your young person react? Alongside the anxiety there’s a real sense of dread.

It’s hard to admit, but if you’ve already been through this a few times, you probably know there’s a good chance it won’t work out, that your young person will end up feeling disappointed, frustrated, angry, misunderstood, awkward, embarrassed, confused, sad, hopeless, rejected – to name just a few possibilities. And you know that you’ll feel those feelings right alongside them. You know you’ll need to take a deep breath (or several) and hold yourself steady while they express their feelings in whatever way is typical for them. Maybe they’ll go quiet and hide themselves away. Maybe they’ll rant angrily and declare the people at the group are all stupid, etc. Maybe they’ll shrug and try to give the impression they don’t care and weren’t bothered anyway, but underneath you’ll know they’re hurting – and that hurts you too.

However they react, you know you’ll be ‘picking up the pieces’ for a while and, sadly, some of these experiences leave their mark for a very long time. You may be left wondering if you or your young person will feel able to go through this cycle again, because right now you’ve both had enough.

I can’t guarantee you’ll never have an experience like this again but if you want to maximise the chances of things going well and, if it doesn’t go well, of surviving the experience with the minimum negative impact, there are two important aspects that need attention. The first is practical preparation and the second is attitude. I’ll cover the first in this blog and the second in Part Two.

Prepare, keep preparing and prepare some more!

You probably know by now that careful preparation is essential ahead of any new activity with your young autistic person.

Good preparation involves a precise and deep understanding of their physical and psychological needs and the best ways of meeting them in different environments.

Advance preparation ahead of any first-time visit needs to involve the following.

• Thorough research about the place/group your young person wants to visit. Find out as much as you can about the organisers, their ethos, the venue and facilities, the activities and the format, the timing, what’s expected of participants, what training and experience the organisers have had for working with autistic young people. This stage is likely to involve contacting organisers and asking lots of questions. You might find it helpful to keep a list of these, so you don’t forget something important.
• Piece your research together to create a detailed picture in your mind, or on paper if that’s easier. Imagine yourself as your young person in that environment, walk through it in your head trying to think about what issues might arise for them. If you realise there are gaps in your mental picture and you need more information, go back to the organisers with your query.
• Talk through what you’ve discovered with your autistic young person. Make sure you’re clear with them about all the things that are certainties (to the best of your knowledge) and the things that are ‘maybes.’ The difference is important. When you’re desperate for things to go well it can be tempting to be hopefully vague or leave out a small but significant detail. Don’t do it! Your young person needs clear reliable information, and they’re depending on you to provide it.
• Think together about the timing of the visit, considering whether your young person will have the energy to deal with something new at that point in the week or day, or even that month. If the timing isn’t ideal, consider whether other appointments or activities could be cancelled or rescheduled to make more room for the visit, both before and after it takes place. Remember your young person needs preparation time and recovery time, even when something goes well.
• Think together about what extra support or resources your young person may need before, during and after the visit, eg, an early meal, extra snacks, a rest, ‘chilling’ time, peace and quiet, you or another safe person accompanying them or being close at hand, meeting group leaders in advance, a quiet space for a break, a less demanding form of transport (eg, a lift instead of walking or public transport).

New activities are naturally anxiety provoking for autistic young people because there’s so much uncertainty involved. Dealing with high levels of anxiety ties up your young person’s emotional and mental resources. This makes it difficult for them to engage with a new activity and experience it as enjoyable. It’s just not possible to enjoy something if you don’t feel safe!

The point of all this advance preparation is therefore to minimise the anxiety provoking aspects of the visit as much as possible by reducing the uncertainty. A young person who’s feeling safe is more likely to engage with the activity for long enough to decide if they like it or not.

I’d love to be able to reassure you that if you do all this preparation things will go well, but you and I know it’s not as simple as that! Wherever autistic people meet a physical and social environment that is poorly attuned to their needs there are going to be challenges, and so the attitude you have going into these situations is just as important as the practical preparation. If you’d like to know more about this, you can read Part Two!