ADVICE FOR CARERS
How to foster a young person with autism
Autism is a lifelong developmental disability which affects how people communicate and interact with the world around them.
There’s no one kind of autism; it affects different people in different ways. You’ve probably heard of the autism spectrum—a term which captures this idea.
According to the National Autistic Society, there are around 700,000 autistic adults and children in the UK.
Naturally, some of these young people will find themselves in the foster system. A 2018 study from the University of Southampton estimated that around three per cent of the young people in foster care in England had an autism diagnosis. It’s likely the figure would be similar in the other nations of the UK, too.
In this article, we’ll look at autism in foster care and hear from a Lika carer about her experience fostering a young person who is on the spectrum.
As mentioned above, autism is a spectrum condition that presents differently for different people. Each autistic person’s strengths and challenges are different, but struggling with communication and social interaction are the condition’s commonality. Some autistic people don’t speak at all. Others take longer to process information or struggle with reading facial expressions. Conservationist and TV presenter Chris Packham, for example, said his autism meant he often felt “confused by the way people behaved”.
Here are some common autistic conditions, according to the National Autism Society:
Experiencing difficulties with verbal and non-verbal communication:
- Taking things literally and not understanding abstract concepts
- Needing extra time to process information or answer questions
- Repeating what others say (this is called echolalia).
Having difficulty reading other people and expressing their own emotions:
- Seeking time alone when overloaded by other people
- Appearing to behave “strangely” or inappropriately
- Finding it hard to form friendships.
Engaging in repetitive behaviour:
- Preferring a strict routine, which may involve wearing the same clothes, eating the same food, etc, every day>
- Fidgeting or repetitive movements, especially when stressed or anxious.
Over- or under-sensitivity
Being overly sensitive (or under sensitive) to light, sound, taste or touch:
- Struggling in noisy environments
- Preferring not to hug
- Avoiding everyday situations to avoid these sensitivities.
Highly focussed interests or hobbies
Becoming deeply interested or obsessed with something from a young age:
- Becoming an expert in a field (e.g., Greta Thunberg’s interest in the environment)
- Gaining huge enjoyment and comfort from pursuing their interest.
Becoming anxious, particularly about social situations, to the point where it impacts them psychologically and physically:
- Learning triggers and coping mechanisms is important to reduce anxiety.
Meltdowns and shutdowns
Shutting down or melting down when they feel overwhelmed by a situation:
- Temporarily losing control of their behaviour (e.g., a tantrum)
- Appearing to “switch off”.
Londoner Donna has been a foster carer for six years. She was previously with her Local Authority, before transferring to Lika eighteen months ago. She’s a kinship carer, meaning her young person is a relative. He’s 17 and was diagnosed with autism two years ago, during an assessment with the Children and Adult Mental Health Service (CAMHS), at Donna’s request.
Donna’s young person’s autism presents in several ways. He can find social interactions difficult. For example, when he was a small child, he would not ask Donna for what he wanted, but he would whisper it to his brother and get his brother to ask for it. He can also be very literal.
“If I say, ‘You need to have your shower by eight o’clock,’ he will go in the shower at 7:59,” Donna said. “You have to learn how to use your wording. So, I then changed it to, ‘You have to go in the shower at 7:45,’ so I know he’ll be out by 8pm.”
Getting that diagnosis was really important for Donna’s young person.
“When he actually got his diagnosis, the lady who diagnosed him said to him, ‘You’re not different, you’re you, and it’s other people that have got to learn to understand you’,” Donna said.
“From that day on, I saw a completely different child. His confidence grew so much. He would talk a lot more. Now I actually can’t shut him up. He still doesn’t talk to other people, but me and him have an extremely close relationship.”
Crucially, it also meant Donna was able to tailor the way she communicates and the kind of care she gives. For example, her young person likes strict routines.
“We had an after-school routine,” Donna explained. “He used to phone me and say, ‘What’s for dinner?’ And I would say, ‘Dog food pie.’ And he’d say, ‘Auntie, really, what’s for dinner?’
“We had to do the same routine every day. If I changed it in any way, he’d say, ‘Oh, you didn’t say, ‘Dog food pie’.’ And he’d hang up. He’d phone me back and then I’d have to do it. So, it’s just remembering to keep everything exactly the same for him. Wording is really, really important.”
Alongside learning and understanding how to communicate with and care for your autistic young person yourself, it’s important to share this information with the people around you—your support network, your young person’s school, and their professional network.
Donna cites an example of the importance of this with her young person. Remember, he’s very literal.
“He got really, really upset because he had a teaching assistant (TA), and the TA was off,” Donna said. “The school hadn’t informed him that she wasn’t well or for whatever reason she wasn’t going to be in. So, when she came back after being away he said, ‘I thought you were dead.’
“And she got very, very upset about that. But because normally they say, ‘Oh, Ms. So-and-so’s going to be off sick,’ or, ‘Ms. So-and-so’s on training,’ and no one had told him why she wasn’t there, he just thought she was dead.”
Not only was it awful for her young person, it wasn’t a nice experience for the TA either, when she returned to work. It’s the kind of simple miscommunication that can lead to people thinking young people with autism are rude.
Obviously, in a school environment, these kinds of situation can usually be handled sensitively and with understanding. But when you’re out and about in the community—perhaps at the supermarket or the local park—navigating the social niceties can be a little bit more tricky. Again, Donna says it’s about finding the right language and setting expectations.
“If he doesn’t want to speak to someone, which a lot of people find rude, I just say to them, ‘He really doesn’t talk to people he doesn’t know’,” she said.
So, what’s Donna’s advice to foster carers who have perhaps been asked to look after a young person who is autistic?
The first tip is to learn about autism.
“There is so much information on the internet,” she said. “There’s groups that you can go to. CAMHS have a lot of autistic groups. There’s also special clubs for autistic children. I would just say it’s about doing a little bit of research. It can make the hugest difference—because I’m not going to lie, having an autistic child can be very, very draining. You’re constantly thinking before you talk. It’s not a natural flowing conversation.”
Learn also about the specific form of autism your young person has, what they need from you, and what you can do to get your communication right.
Donna’s second tip is to take any kind of confrontation out of communication.
“If you’re finding that a young person is not talking to you, the thing that worked for me is don’t look at them when you’re talking to them,” she said. “So we have most of our conversations when I’m cooking. He’s standing on one side of the kitchen and I’m normally chopping and then turning towards the cooker, so the eye contact isn’t there. I get more of an understanding of what his problem is or how he’s feeling.”
Thirdly, learn to read your young person’s messages.
“For instance, if we’re in a meeting or something is making him uncomfortable, he will flick me a lot, especially on my arm,” Donna said. “He’ll play with my hair or he’ll click his fingers if he really needs to get my attention, because he knows I hate it.
“If he’s really, really had enough and he’s been flicking me and basically I’m not shutting up or whoever is talking to him is not shutting up, then he will start clicking his fingers.”
It’s a non-verbal way to communicate his message.
Lika is a therapeutic fostering agency, rated Outstanding by Ofsted. Every decision we take is based on Systemic Family Therapy principles. That means relationships, openness and honesty are at the heart of everything we do. All Lika foster carers receive extensive training in Systemic Family Therapy principles and therapeutic parenting techniques.
It’s similar to the training a newly qualified social worker receives (although not quite as technical) — so you’ll be fully prepared for your first placement and be viewed as a professional foster carer in your own right.
Being a Lika foster carer means always receiving specialised and consistent support from our expert team of professionals.
Your support will include:
- 1 to 4 weekly supervisions with your supervising social worker to talk through and understand the needs of your young person
- 24/7 out-of-hours access to one of the Lika team, so you’re never unsupported if things feel difficult
- Access to Lika’s team of skilled and knowledgeable Systemic Psychotherapist Consultants and Systemic Social Work Practitioners, who are never stuck for ideas on how to support
- Virtual monthly foster carers support meeting, led and chaired by experienced foster carers
- Virtual fortnightly Therapeutic Family Consultations, facilitated by one of our psychotherapists and open to all our agency’s foster carers
- Membership to the National Association of Therapeutic Parents and The Fostering Network
- Life coaching for foster children, birth children and foster carers
- Our Mentor Support Scheme, which partners new foster carers with more experienced foster carers
- Free training for fostering support networks. (Your family and friends are welcome to join any of the training Lika offers.)
- Access to Lika’s support workers, depending on the level of need for the young person
- Access to Lika’s Educational Consultant, who can offer ideas and advocacy in supporting young people to achieve in education
- Help from Lika’s Systemic Social Work Practitioners/Therapists, who can undertake skilled direct work without waiting lists for the Child and Adolescent Mental Health Service (CAMHS)
- 14 to 21 days of paid respite (depending on complexity) to recharge your batteries and have some space for self-care.
If you’re in south or east London and you’re interested in becoming a foster carer, give the helpful team at Lika a call on 020 8667 2111. We’re here to answer all your questions.
We’re in the London boroughs of Croydon, Sutton, Bromley, Merton, Lambeth, Westminster, Wandsworth, Lewisham, Southwark, Islington, Camden, Hackney, Tower Hamlets, City of London, Haringey, Newham, Redbridge, and Barking and Dagenham, Hammersmith and Fulham, Kensington and Chelsea,We’re currently in Barking and Dagenham, Barnet, Brent, Bexley, Bromley, Camden, City of London, Croydon, Greenwich, Hackney, Hammersmith and Fulham, Ealing, Haringey, Islington, Kensington and Chelsea, Lambeth, Lewisham, Merton, Newham, Redbridge, Southwark, Sutton, Tower Hamlets, Wandsworth, Westminster, Enfield, Harrow, Havering, Hillingdon, Kingston upon Thames, Richmond upon Thames, Waltham Forest, Harrow, Essex, Nuneaton, and Tameside.