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Engaging effectively with parents, carers and families

This unit examines how diagnosis of autism impacts on a child’s family, and looks at the importance and practicalities of establishing strong links between the school and the home.

In the unit, you will learn about:

  • The impact of diagnosis on families – including siblings and wider family members such as grandparents.
  • How families can adapt to support the child with autism and each other.
  • Coordinating school support through the SENCO.
  • Establishing links between the home and the school.
  • Maintaining communication between parents and teachers.

Parents' responses to a child's diagnosis

Parents with children on the autism spectrum may initially show a variety of negative emotional responses to a child’s diagnosis. However, they may also feel positive emotions in helping their child or seeing them achieve success. Use the switch to see some examples of these different emotions.

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Parents' emotions

NEGATIVESwitchPOSITIVE
  • Pride
  • Love
  • Happiness
  • Satisfaction
  • Failure
  • Anger
  • Sadness
  • Loss
  • Guilt
  • Frustration
  • Isolation
  • Inadequacy
  • Embarrassment
  • Hopelessness

Family difficulties after diagnosis

Even after coming to terms with a diagnosis, families face a range of challenges and disruptions.

Select one of the circles to learn more.

  1. Social isolation
  2. Strain on relationships
  3. Mental and physical health problems
  4. Financial difficulty
  5. Support

Social isolation

Parents can find it difficult to take their child on holiday, socialise with other families, or even go into shops and other public places. These situations may be challenging for a child with autism or may encourage difficult behaviour.

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Strain on relationships

Parents, siblings and extended family may have differing understandings of the autism spectrum. Knowledge of a child’s care strategies and needs may differ, which can place added strain on relationships between family members.

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Mental and physical health problems

Increased dependency can sometimes lead to heightened levels of stress in parents of disabled children. In some cases, this can cause mental or physical health problems. Research shows that parents of disabled children are more than twice as likely to experience health difficulties than parents of non-disabled children.

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Financial difficulty

Many families with disabled children experience financial problems. Studies have found that 93% of families with disabled children report some kind of financial difficulty. The cost of raising disabled children is higher than that of typically developing children, and parents of disabled children may be unable to work due to childcare commitments.

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Support

Families require practical and emotional support when raising disabled children. Grandparents and extended family are often relied on to provide this, with one in five under-16s looked after by grandparents during the daytime. Over one third of these grandparents spend three days a week in care roles.

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  • SNAAP: an after-school club set up by parents

    This footage of an after-school SNAAP group features interviews with participating pupils and parents, a committee member and support worker. They discuss how the club began and has since developed, and the ways in which children benefit from its activities and support.

    This video clip relates to task 1 in your PDF of unit 18.

    Show transcript

    Christine Haugh – Committee member of SNAAP

    I’m Christine Haugh and I’m one of the committee members on SNAAP which is an afterschool club and short breaks provider for young people and their families who are affected by Autistic Spectrum Conditions.

    And the focus is really on getting people to socialise, to make friends based on common interests, and to develop and extend those friendships outside of SNAAP.

    I have two boys who both have Autistic Spectrum Conditions, and it was very difficult to find any suitable leisure activities for them. We tried every possible mainstream playgroup, but my boys were sent home from all of them, they were very, very, unhappy at all of them, and I thought it was important to be able to have some activity with the whole family might be welcome. So I contacted all of the local secondary schools and one school in particular came back and said they were particularly interested in supporting a local group, and so we were able to start with maybe two or three friends. It was really just a handful of people who were starting in 2004 with a weekly time slot where we could use the facilities at the school, computer facilities at the school. There’s parents here who come from every walk of life who have been able to share their wisdom with one another, and really support each other very actively, which is fantastic and that benefit is felt by the children I think, the young people.

    Parent 1:

    The thing I most appreciate about this club is that my son gets a chance to be himself without being criticised or picked on like in a normal setting. I get a chance to speak to parents that are in a similar situation as myself and I get a lot of information about what’s out there; the kinds of facilities. Just generally, talking to people that really do understand. Most importantly, we are around the people that are actually giving us relevant feedback and information that’s relevant to my child and our social and emotional needs.

    Parent 2:

    When my child was first diagnosed it was extremely isolating and it’s benefitted me massively having other people to talk to talk about the stresses and the strains but just people that instinctively know and understand what you go through. And it’s great for my child to have an opportunity to attend an after school club because not all, not many, after school clubs, play schemes are inclusive.

    Parent 1:

    I think that other schools can learn a lot from this club. They could easily help the special needs children to access these kinds of things.

    Christine:

    We started with the after school club based on a lot of the children with autism locally seeming to be very interested in computers, and using that interest in computers as a way to encourage and develop friendships.

    Pupil 1:

    It’s really good because I can socialise with people and I can also play games like this one here. And then again, there’s chocolates and cakes!

    Pupil 2:

    The reason why I like coming to SNAAP club with my mum is because I can enjoy playing football, playing the ‘seek of fortune’ and doing some other stuff in my school, because I really enjoy it.

    Pupil 3:

    It’s just a little place where I can calm down after school. It’s all good round here because of the internet, food, mainly everything.

    Christine:

    Whether it’s developing skills with Word, or your skills with Excel, or playing on computer games, there’s a range of different activities that our young people have engaged in. By bringing them together to do that, then they realise that there’s other children who like the same things as they do, they can develop a shared interest, and learn more about turn-taking with games, socialising, some of the social aspects of playing and take that relationship that they’ve started in SNAAP, outside. And start doing other things that aren’t related to computers outside as well.

    We’re certainly making life just a little bit easier for parents. And they know if their child is going to play-up, that the committee members and the support workers will be able to cope with that child’s tantrums but hopefully be able to recognise the triggers to prevent it from happening.

    Ian Harriman - support worker

    Autistic kids a lot of the time will respond differently to other adults. I mean, obviously a parent will be reacted to differently than someone who’s just there being casual with them reacting to their interests, than to someone who has to play the ‘hard-cop’ and force them to not do things when they are acting out. And it’s great having the ability to work with them more on their terms and in a field that they enjoy better, getting to relax with them.

    Christine:

    All of us who run SNAAP are actually volunteers; none of us are paid for the work that we do. I think it was very amazing that the school decided to agree to host us. When we first arrived at the school, not a single one of us had anything to do with the school locally. But since then, a relationship has very successfully grown and nurtured, and now we’re at the point where we do have members who are involved in the school community. But at the time, I think it was just a concern for community cohesion and a school that was truly inclusive, that led to them accepting to allow a group of kids with challenging behaviour to come and trash the place once a week really.

    It’s not just tea and sympathy, we also kind of provide some details about what’s taking place in terms of good practice locally, good practice nationally, we have a host of professionals who come in on a regular basis. The facilitator’s feed back what’s happened in the group, so the parents get instant feedback. You know, what kind of objectives are we striving towards in this week’s group, and, how well their child’s done in meeting those objectives, and, who in the group are they making friends with most importantly, so they can develop those friendships outside of the group.

  • SLCN: parents

    This video provides a practical example of how parent-teacher interaction and good home-school communication can help children with speech and language difficulties. A mother explains how communication with her son has been improved through language games that can be used both in the classroom and at home.

    This video clip relates to task 1 in your PDF of unit 18.

    Show transcript

    Shazia – mother of Owais:

    My name is Shazia, and my son Owais is in Reception. He has learning difficulties.

    Teacher-pupil interaction:

    Rachel: Are you ready then Owais? Ready...

    Shazia:

    When I found out he had problems, it was quite a big thing for me, because it’s quite scary, especially learning, and education is a really important part of your life. It was quite worrying, but with all the support I get with the school and Owais progressing and I’ve actually seen that he’s going to be doing ok.

    Teacher-parent interaction:

    Hannah: I’m going to play the game with you just like we would with the boys. So you know what it will be like then to play with the boys.

    Sarah Rutty – Head Teacher:

    What parents expect from school is clarity of expectation, opportunity to develop themselves and their children, whether that’s about attending a parenting class to help them become better parents, or whether it’s about working alongside teaching staff to actually understand how to support their children with learning at home.

    Teacher-parent interaction:

    Hannah: Go, go, go, go, go, go, go. So the boys are getting really excited. And then when they’ve pulled it out, you’d say, now what do you think it might be?

    Rachel Drinkwater –Lead Language Practitioner:

    A really good idea is to meet with the parents of the children that have the learning difficulties and to meet with the senior leadership team and the teacher, the key worker, and the parents, to work together, to go through activities that the parents might want to carry out at home with the children.

    Teacher-parent interaction:

    Teacher: And then we’d say, well let’s Owais have a go. And so we pass it to Owais. Say “ready”, “steady”, “go, go, go, go,….”

    Rachel:

    So today our Assistant Head Teacher, Hannah, went through the bag game with two of the parents, which is a speech and language focus, focussing on ‘every child a talker’, vocabulary and language being the main focus. So Hannah showed the parents how to do the activity, told them about the word level that the children are working on, and how then to deliver it back to the children.

    Teacher-parent interaction:

    Hannah: So I’ll start off perhaps with Sahill, and say, “Sahill could you find me the brown bear?”

    Rachel:

    This happens on a regular basis that the senior leadership team or the class teacher works with the parents to show them activities and games and resources, that they can be using at home.

    Teacher-parent interaction:

    Hannah: They put the animals back into the bag which also means they’re tidying up after themselves and getting that understanding that they have to be responsible.

    Rachel:

    This helps the children and the parents to understand exactly where the child is at. You don’t want to keep and home two separate things. We are really working together to get the most from that child. So it’s really important that the parent can see what the teacher is trying to achieve and vice versa, what the parents wants the teacher to achieve. So you’re working together, it helps massively.

    Teacher-pupil interaction:

    Rachel: Ready…

    Owais: Steady…

    Rachel and Owais: go, go, go….

    Rachel:

    And the child can see that this game isn’t just for school, it’s for at home as well. And the quick progress that they’re making if they’re running the two alongside each other is vast. And the relationship between the parent and the teacher is even stronger.

    Shazia:

    There was a time when Owais’s speech and language was really, really poor. But once he’s come into nursery and into school he’s picked up so well, that me and Owais can have a full conversation now. We’re like best friends! So, yes, he’s doing well, and I think it’s all the support the school’s given him.

    Mehnaz – mother of Sahill:

    I’m really grateful to all the staff at the school who continue to help Sahill.

    Teacher-pupil interaction:

    Rachel: Can you find me the animal that flies?

    Sahill: Bat.

    Mehnaz:

    And my family and my family friends, they come into our house, and they’ve noticed a huge improvement in Sahill’s speech.

    Teacher-parent interaction:

    Hannah: This is a resource that we’ll be able to send home with you, to borrow.

    Sarah Rutty:

    The quality of relationships with parents, the trust, and the expectation between both school and the parents that you’re all engaged on that same journey, that you both have the same commitment for and from their children, I think is the key to raising the bar of success for the children that you’ve got in your care.

    Teacher-parent interaction:

    Hannah: Thank you very much, thank you very much for coming in.

    Mehnaz and Shazia: Thank you.

Home-school communication

Strong communication links between home and school should be maintained. This will ensure that support approaches remain consistent and that both parents and school staff are kept aware of any changes that may affect a pupil. Possible methods of communication include:

  • Home-school books
  • Visits
  • Letters
  • Discussions
  • Diaries
  • Email
  • Text messaging
  • Phone
  • Video footage
Home-school communication