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Supporting autistic parents

Kabie Brook, an autistic parent and chairperson/co-founder of Autism Rights Group Highland (ARGH), gives advice for professionals on how to support autistic parents. This article first appeared in Your Autism Magazine.

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Author: Kabie Brook

Supporting autistic parents

Autism needs to be recognised as a fact without prejudice. If you work with children, and autistic children in particular, you will come across autistic parents. Some will disclose and some will not: this is their choice and should be respected. You should also consider that some people will not have identified that they are autistic themselves.
 
It is important to acknowledge that you will work with autistic parents at some point, and to understand what this means for you in terms of legal requirements and obligations. As autistic parents, we love our children no less than and parent with as much love and concern as others.
 
Our insight about our children’s needs should be invaluable to you, too. If you are receptive to making adjustments and accept that your understanding of situations may be different to the autistic person (just as theirs is to yours), it will be much easier to work together to do what’s best for everyone.
 
Many autistic parents will struggle with professional interruption to routine, having to meet new people, home visits, arranging appointments that fit into existing routines, and even the system of appointment making. Have patience and respect for the disruption you are causing to autistic parents, as you would for an autistic child.
 
Being observed with the worry that we may be judged unfairly may also cause anxiety. We have spent so much of our lives being told that we’re getting it wrong just because we are different. Behaving naturally in an unfamiliar environment may be impossible.
 
Another common misunderstanding comes from a tendency for many autistic people to be very “solution-focused’. This can be misunderstood because it means talking about problems often isn’t our primary concern. If something needs to be discussed in detail, it’s helpful to explain why this is necessary. Don’t assume that we will just know. Everyone is different and the most important thing that you can do is to listen and believe us when we ask for adaptations or say that we are struggling with something. It’s always good to keep in mind the basic checklist below, which are relevant to both adults and children. They may affect people more or less: we are all different!
 
Checklist for professionals
 
1. Avoid wearing strong perfumes, fabric softener with a lingering scent or jangly jewellery. These can be distancing, painful, or may make it hard for someone to be in the room with you.
 
2. Give people multiple options for how to contact you. Some people will struggle with the phone or not use it at all.
 
3. Offer choice for appointment times. Some people may prefer the first appointment of the day to reduce the risk of long waiting times.
 
4. Provide alternative waiting areas. Some people may be okay to wait but not in the designated waiting area. Offer a quiet space or let them wait outside and text them when it’s their turn.
 
5. Remind them of their appointment. A text alert reminder the day before or that morning may help to avoid missed appointments.
 
6. Have flexible lighting. If your room has artificial lighting, have an uplighter available that can be used instead of the main lights.
 
7. Have alternatives to group activities. Be aware that requests to take part in them may induce stress and may not be suitable for everyone. 
 
8. Support follow-up work. If you’re asking people to implement new strategies at home or ‘do things’ like make a chart or keep a diary, be aware that this may be very difficult and require support. Someone who struggles with this is not choosing to disengage or be difficult.
 
9. Do provide summaries. To-the-point, information-based written records of discussion and outcomes will help to back up any verbal instructions and create shared understanding and agreement.
 
Date added: 30 October 2017