Being an autism parent brings a life of many unknowns. How will my family react to this diagnosis? Will I find a suitable school for my child? Which approaches are the best? Will my child ever learn to talk? How will I pay for all the interventions? And who will care for my child after I am gone?

Apart from the elusive answers to these significant questions, we also deal with the day-to-day unknowns. How do I comfort my neurotypical daughter when her brother has ripped up her homework again? How am I going to handle the tantrum which will follow when I tell my son he can't have chicken nuggets because they are finished? Will we be able to get through eating out as a family without a meltdown? And how am I going to keep calm when my son's inflexibility is on top form today? I just don't know.

Still, as ASD parents, we try to look on the bright side and keep our minds on the many highlights of having a child with autism: the unique ways of looking at the world, the sharp visual memory skills, the refreshing sense of humour, and the brutal honesty.

Then along came COVID-19.

April is Autism Awareness Month worldwide, and while all of us have had to adjust and find our new normal during lockdown, parents with children with ASD have so much more to consider during this time, especially parents of children with ASD who have strong communication challenges and challenging behaviors.

There is no sleeping in late, just seeing where the day takes us, or carrying on working from home while my child plays all day. No, these are luxuries reserved for neurotypical families. Change is hard for children on the autism spectrum. A break in routine can trigger behaviors and uncertainty can increase anxiety. We also have to consider that most parents of children on the autism spectrum live with high stress levels even when there is no lockdown involved. They too need support.

Here are a few suggestions for parents of children with ASD during lockdown, as well as for friends and family who want to show support to parents of children with ASD.

Tips for lockdown for parents who have children on the autism spectrum

  1. If both parents are at home, divide the day into 2-hour segments. Each parent is responsible for the child for 2 hours at a time, then swap. For children who are less demanding, divide the day into morning and afternoon shifts.
  2. Make a schedule you stick to so your child has structure and order in the day. For example: 6am breakfast, 7am sensory activities, 8am outside play, 9am play in the bath. Schedule activities your child likes at intervals during the day and stick to it every day.
  3. Make a visual representation of your daily schedule so your child knows what will be happening next.
  4. Distinguish between weekdays and weekends and have different activities for each. Schedule breaks during each scenario.
  5. Use a timer so your child knows when one activity is ending and another will begin.
  6. If your child is prone to running away, consider a safe seated activity setup for limited periods, such as using an appropriate car seat attached to a dining room chair while activities are set up at the dining room table.
  7. To break things up, and if your child enjoys being in the car, set up play time in the car, put music on, or drive up and down the driveway.
  8. Take your child on a walk around the garden. Try to engage them in physical activities such as running, jumping, or playing with a ball. When you are back inside and your child is tired, let them watch something on the iPad while you try to get back to work.
  9. Set goals for your child so you have motivation and targets to reach for in terms of specific skills you would like your child to achieve during lockdown.
  10. Use social stories to help explain the many changes which have happened, as well as how to stay safe during lockdown.
  11. Look online for virtual parent support groups you can participate in.
  12. Remember to schedule downtime for yourself, even if it is a cup of coffee. It is ok to have a bad day. This does not mean you are a bad parent.

How to show support to families with ASD during lockdown

  • Offer a listening ear over the phone to close friends who have children with ASD. ASD is emotionally demanding on parents. Having a safe place to talk about the challenges can be healthy for parents who need to process what they are going through during lockdown.
  • Keep confidential whatever ASD parents have discussed with you about their child.
  • Offer to go grocery shopping for single parents of children with ASD.
  • Ask if the parent would like you to look up resources and activities online for children with ASD. ASD parents do not have much downtime; ASD parenting is very hands on.
  • Invite them to call you if they need to talk or unload after a difficult day.
  • ASD is expensive. It comes with many appointments, assessments, specialist visits, and ongoing support. Offer to sponsor a session if this is appropriate.
  • Mention the positive attributes about the child with ASD. Parents are constantly told what their child cannot do and what the child's limits are. During lockdown parents may feel overwhelmed and tired. Communicating positives can go a long way.
  • If you have a neighbour who has a child with ASD, consider baking treats or making a meal which you pass over the fence or leave at the door, using safe precautions.
  • Do not judge neighbours or parents you see from over the fence losing their cool with the kids with ASD. It may be the 12th time today the child has thrown food at a parent. Parents are people too and they have their exhaustion point. Rather send a WhatsApp saying you are thinking of them and asking if they need someone to vent to.
  • Remember, for families with ASD, autism awareness does not end at the end of April. It is year round.

General information about ASD

Autism spectrum disorder (ASD) is the term given for a developmental condition which affects the following areas:

  • Social interaction
  • Communication, verbal and nonverbal
  • Repetitive behaviors
  • Sensory processing

Each person with ASD is different. If you have met one person with autism, you have met one person with autism. ASD affects people from all walks of life, all countries, all social classes, and all ethnic backgrounds. Autism occurs more often in boys than in girls. Early support can help improve skills and day-to-day functioning.

Signs of autism before 12 months

Shared by Dr. Annette Nunez, PhD, LMFT, Director of Breakthrough Interventions Denver, USA.

  • Child does not respond to his or her name when called.
  • Child does not imitate physical gestures, such as waving, pointing, or smiling.
  • Child does not imitate sounds.
  • Child does not babble.
  • Child does not use gestures to communicate, such as pointing or waving.
  • Child does not make direct eye contact.
  • Child does not follow an adult's pointed finger.
  • Child lacks shared enjoyment.
  • Child has more interest in objects than people.
  • Child lacks back-and-forth communication such as sharing sounds, smiles, and other facial gestures.

Additional signs before 24 months

  • Child does not have any spoken words.
  • Child does not have meaningful two-word phrases.
  • Child does not respond to verbal instructions.
  • Child has limited play skills with toys.
  • Child plays with toys in unusual ways, such as spinning, sniffing, or licking objects.
  • Child prefers to play alone or seems aloof.
  • Child appears disinterested in people or unaware of people around them.
  • Child lacks imaginative play skills.
  • Child has repetitive motor movements, such as walking in circles, jumping, or pacing.
  • Child has an unusual insistence on routine.
  • Child has sensitivity to external lights and sounds.
  • Child has extreme emotional outbursts, such as laughing or crying for no apparent reason.