1.1 Sources of stress in families
Parents are likely to experience substantial stress. For instance, they may have to manage difficult behaviour, such as their child’s anger outbursts, self-injury or insistence on wearing the same clothes every day. Sometimes the desperation to find immediate solutions for young children’s behaviour may not have the best long-term consequences, as Charlotte Moore, mother of George and Sam, freely admits:
To start with the basics – food. It’s taken 20 years to get George and Sam to eat anything like a normal diet. Most autists get stuck on a tiny range of trusted foods – I wish I’d kept all junk at bay, so that the boys would have had to obsess over, say, chicken, brown rice and carrots rather than chocolate and HP sauce (George) or crisps and icing (Sam). I used ‘treat’ food to help them cope with stressful situations, such as travelling or going to a party. Once they knew such treats existed they held out for them. Now, I would avoid such situations.
The challenges faced by families vary depending on the age of the autistic child and their cognitive skills, such as whether they use spoken language. A child who has difficulty communicating may appear angry towards others or seek isolation, when the underlying problem is
Some children are hyperactive and impulsive. Other family members may have to adapt to not having spontaneous activities because of the autistic person’s need for structure and sameness.
We started to avoid group activities as G couldn’t join in, not understanding how to engage and interact. Swimming, music, even group speech therapy became inaccessible. I will never forget the speech therapist leading the group, taking me to one side and gently suggesting that G wasn’t benefitting and was disruptive to the group. I left the room and we went to feed the ducks, which ended up with him eating bread and me sobbing through my sense of abandonment, hopelessness and isolation.
Lack of sleep is also a significant issue. Children with autism often have disrupted sleep patterns, and inevitably this affects parents too. Jacqui Jackson is a single parent of seven sons and daughters, several of whom are on the autism spectrum. In 2006, when her family was still very young, Jacqui commented that she often went for several nights without sleep, and only took cat-naps on other nights. She was trying to write her PhD thesis at the time.
Physically it does take its toll … It gets you down and it affects how you work.