Some ideas for sharing information about their diagnosis of autism spectrum disorder (ASD) with a young person

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1 Some ideas for sharing information about their diagnosis of autism spectrum disorder (ASD) with a young person Telling your child about their diagnosis of ASD can be a big deal. This information leaflet was put together to give parents /carers some ideas about telling their children about their diagnosis of ASD. Preparing your child: Building self-concept and self-esteem People with ASD are often described as visual learners. One way of helping someone develop their sense of themselves is to help them explore who they are and show them what they mean to other people. You can try making up a scrap-book about the young person. Put in information about his / her strengths, things s/he finds difficult, reasons why everyone loves him / her. Include qualities that are not so obvious to himself / herself - kindness, nice smile, etc. give concrete examples. Sometimes these more abstract qualities are not obvious to young people with ASD. Put in information about others in the family - what others are good at, what they find difficult, what worries them, what they like, etc. You want the young person to be able to draw comparisons between himself / herself and everyone else. If there are siblings, it might be an idea to give each sibling their own scrap-book. Be prepared yourself Try and be prepared. Your child may already know they are different in some way to their peers. They may be asking questions or they may be keeping it to themselves. Some children feel there is something wrong with them and having simple, clear information can be very helpful to them. Think about what you would like your child to know and feel about themselves. Think about the words you might use.

2 Think about good opportunities to sit down and have a chat. Sometimes a child will come right out and ask so you may want to be ready.

3 One idea for telling your child Focus on things everyone is good at and everyone finds difficult. If the young person likes numbers, you might draw a series of numberlines from 1 to 10 for the young person, mum and dad, etc. For each numberline have things you find easy and things you find difficult, say three of each. Include 'making friends', 'talking and listening to people', 'playing with other people', or other phrases which capture the young person's difficulties in relation to autism - they must make sense to him / her. On these numberlines, each of you rates your own experience. What emerges should be a picture of the young person finding some things easy but finding the social aspects difficult. You might tell them that the pattern of finding 'making friends', 'talking and listening to people', 'playing with other people' is called autism spectrum disorder and is common throughout the world. The young person needs to know s/he is okay and that there are many people like him / her and that s/he will grow and develop and one day is likely to find these things easier. There is lots of support and you understand and other important people understand. Below are some good ideas from Catherine Faherty:

4 Ten Guidelines for Telling Your Child about ASD By Catherine Faherty. Catherine Faherty is a TEACCH psychoeducational specialist and autism teacher trainer in North Carolina. She is the author of three books on autism, including Communication: What Does It Mean to Me? (Future Horizons, 2010). Autism Asperger s Digest July/August 2012 Back in the 1980s and 1990s, a highly controversial topic of conversation among parents and professionals was the question, Should we tell our child that he has autism? Today we have learned that such self-knowledge is essential, that children need to understand how and why they may feel different from others around them, and what it means. In the absence of accurate information, all sorts of wrong conclusions may automatically fill in the gaps, which could negatively affect a person s selfunderstanding. Now the question has changed to How do I tell my child that he is on the spectrum? I have developed these guidelines in the years since 1990 when I first tried to explain autism spectrum disorder (ASD) to a 10-year-old boy, one of my former students. The method is autism-friendly, using a visual strategy and the process of sorting concrete bits of information into two lists. When to Tell Your Child Timing. Some people recommend that the time to tell your child is at the time you discover the child s ASD diagnosis although many parents prefer to first give themselves time to digest the information. Some parents have introduced ASD to their five-year-old child. Some wait until the child is seven or eight. Many have first told their child at nine or ten years of age, or later. Follow your instinct. Listen. If you haven t yet you will know for sure that it is time to introduce the subject when she says or does something that indicates she may feel different from her peers. Of course she might not ask directly. For example, one 7-year-old girl came home after school and told her mother to buy me a new brain! Keep in mind that by the time she says something aloud, it might have been on her mind for a while. For some children it may take many conversations throughout the year or the following years before they embrace, or even remember, the information. For others it clicks right away and they feel a sense of relief! Before puberty. Some parents do not observe any indication that their young child wonders about himself compared to peers. In any case it is usually best to tell him before puberty, even if he does not ask or indicate wonder. Waiting for the time when he is older to tell your child can make it more difficult for both of you. There are too many new things to adjust to during puberty and adolescence. Most teenagers resist their parents telling them something that might be uncomfortable to hear at that stage, especially if it is about being different. Of course, if you are just now discovering about ASD and your child is a teenager, you did not have the option to tell him earlier. You probably should not wait any longer to tell him. This is information that he needs to

5 have as he strives to make sense of daily experiences. How to Tell Your Child Familiarity. Familiarity makes things easier. Let your child hear and see the words autism spectrum disorder or Asperger s Syndrome (AS) early on. Simply let him hear you and other family members use these words as part of everyday conversation. You do not necessarily have to define it when you are talking just use the words. Related books and magazines about autism can be visible around the home. Write lists/get perspective. Help your child see that every person has strengths and challenges. Help him develop perspective about his strengths and challenges that he is not the only one who has challenges or strengths. With your child s help write the name of each family member (and/or other significant children and adults) on separate sheets of paper. Draw a line down the center of each page, dividing it in half. Use one side for strengths, the other for challenges. Define strengths as talents (good skills) activities that might feel natural, easy, and probably enjoyable. Define challenges as activities that need more practice or more time to accomplish things that may feel difficult or uninteresting. After making these lists of strengths and challenges for each person, write your child s name at the top of another sheet of paper. On your child s paper follow the same procedure. Then write AS in the strength list. Use the term that is most accurate in your child s situation, or the one that you feel most comfortable with it may not be AS; it may be autism, high functioning autism, or ASD. When adding AS (or the term you used) to the list, explain that one of the reasons he has some of his strengths (e.g., great memory, excellent speller) is that he has AS, which is another thing about him that is a strength. Then add the same diagnostic term to the list of his challenges. Explain that his challenges (e.g., handwriting, making friends) are because AS affects other parts of life considered to be potential difficulties. Here you can also refer him to the lists of challenges that were made for other people. He s not alone; everyone has challenges as well as strengths. In good company. You then might also write a list of famous people throughout history and current prominent persons who are thought to have had characteristics related to ASD. You can make similar lists (strengths and challenges) for these famous people. For example, Einstein had difficulty making friends and he had a narrow focus of interests. Be careful to make it clear that most people with AS are not famous nor are they geniuses. For more information see the book, Asperger s and Self-Esteem: Insight and Hope Through Famous Role Models by Norm Ledgin (Future Horizons, 2005). Ask for help from those you trust. Some parents prefer that a trusted friend, family member, or therapist introduce this information, especially if the newly diagnosed person is a teenager. Type or write. Sit side by side at the computer and have a written conversation in silence by taking turns typing. Or talk while typing. Ask your child, Do you want to just read, or read and listen at the same time? Remember that reading makes new

6 information more easily digestible for most individuals with ASD. The added bonus is that he can take the paper with him and read it again on his own time, in his own space. Learn to write Social Stories to help you share accurate social information with the child or adult on the spectrum. Lifelong process. Self-knowledge is a process that continues throughout a person s life. Do not try to explain everything you know about ASD to your child all at once. Speak and write in a reassuring and calm manner. Keep it straightforward, simple, and clear. If you don t know the answer to a question, say so. Look for the answer together. Continue the discussion as your child matures. You may want to use my book, Asperger s What Does It Mean to Me? (Future Horizons, 2006). For adults with ASD and those who work on their behalf, see the Resources below. Self-advocacy. Knowledge is a precursor to helping your child learn to advocate for himself as he grows. He must understand his strengths and challenges and what can help. Help him learn when and how to ask for help, and whom to turn to when he needs assistance. Educating key people in his life is also a necessity. For some individuals on the spectrum, educating others about autism, with the altruistic purpose of contributing to the betterment of society in general, has become a source of pride and accomplishment. Self-knowledge is a lifelong process. You can help your child begin his journey of self-understanding in a positive, autism-friendly way. Resources Gaus, V Living Well on the Spectrum: How to Use Your Strengths to Meet the Challenges of Asperger Syndrome/High-Functioning Autism. New York: Guilford Press. Grandin, T., and S. Barron Unwritten Rules of Social Relationships: Decoding Social Mysteries Through the Unique Perspectives of Autism. Arlington, TX: Future Horizons. Zaks, Z Life and Love: Positive Strategies for Autistic Adults. Overland Park, KS: AAPC. Copyright Autism Asperger s Digest All Rights Reserved. Distribution via print means prohibited without written permission of publisher. More resources them: people Workbooks for children and young who are exploring what ASD means to

7 I am Special, 2nd ed. by Peter Vermeulen Asperger s: What does it mean to me? by Catherine Faherty Autism: What does it mean to me? by Catherine Faherty Books recommended by parents: 'Can I tell you about Asperger Syndrome?' by Jude Welton. 'Can I tell you about Autism?' (good for 8 to 10 year olds). 'Do You Understand Me?' written by an 11 year old girl with autism (Sofie Koborg Brosen) for 10 years plus children. 'Asperger Syndrome, the Universe and Everything' by Kenneth Fall. Tony Attwood writes about telling your child in some of his publications. 'All Cats have Asperger's Syndrome' has been recommended by parents Websites: Below are two links about telling your child their diagnosis. - Click on following link for parent's experience of telling your child - For information from the National Autistic Society in the UK, please click on the following link: NAS telling your child Research The following research project was carried out by Clodagh Feehan, an assistant psychologist with parents in the South Lee Autism Service. Clodagh asked a number of parents about their experiences of telling their children about their diagnoses. a huge hurdle : Parental Experiences of disclosing a diagnosis of Autism Spectrum Disorder (ASD) to their child.

8 Author: Clodagh Feehan Spies Supervisors: Micaela Connolly & Dr. Marelise The present study aimed to address the research gap and focus on parental experiences of disclosing a diagnosis of ASD to their child. The privilege of insider knowledge from parents who have already gone though this experience is salient and offers clinicians a deeper understanding of parental and family need at this time. Moreover, it was envisioned that this research would make relatable stories available for future parents embarking on the experience and will also shed some light on the unknown that is telling the child about the diagnosis of ASD. Ten parents (9 mothers and 1 father) were interviewed. This study aimed to answer the following questions: (a) How do parents tell their child about a diagnosis of ASD? (b) Why do parents tell their child about a diagnosis of ASD? (c) What do parents identify as the positive and negative aspects of this experience? Four main themes emerged from data analysis. 1. The Disclosure Snowball: Percolation & Escalation The act of telling the child about the diagnosis of ASD does not occur in isolation. There appears to be a difficult and anxiety-provoking build-up for parents. This comprised of both cognitive and emotional components. It is evident that this is a challenging, but necessary, precursor to telling the child that is based on parental readiness. The percolation process begins when parents hear of the diagnosis themselves. A period of time is needed to process and learn about the ASD diagnosis to obtain cognitive clarity. Emotional readiness is reached when parents come to a stage where they had dealt with their own feelings about the diagnosis and could control their emotions in order to be steady and calm when sharing the information with the child. Many parents alluded to over-thinking the situation and being in a state of inner turmoil and frustration. A snowball effect can occur with parental rumination building upon itself and causing the act of telling the child to be perceived as an even bigger hurdle: Letting the process build up and build up and become a bigger mountain. Ahm because that s all that happens it sort of becomes bigger and bigger and bigger in their heads and then they become so anxious about how you how you do it. It is paramount to outline that after the difficult and sometimes agonising buildup to telling the child, many found the act of telling akin to an anti climax or

9 non-event after all the hype and worry. The dominant feeling amongst the parents after telling the child was one of relief. 2. Child s Search for Meaning The child s readiness for the information is central to the process. It can range on a continuum from needing to know, being open but rather indifferent, to not being ready to hear of the diagnosis. In most cases the child needed to know about the diagnosis. Their questions, high self-awareness and blatant search for answers instigated the focal conversation and in the end sharing the diagnosis was not a decision at all. The parents felt telling them could not be avoided. she said Mammy what s wrong with me?..i m different..i m really worried he felt different he didn t fit in. His thing was I don t belong here These children had a sense that they were different and with a lack of knowledge they drew their own conclusions for why that might be. Some worried they had mental health difficulties, questioned why they were born, wondered if they were adopted or thought they were bad. In a sense, the parents felt that telling the child the real reason could only help the situation by banishing the internal struggle of a racing mind. Another factor played a part here with parents feeling that the children had a right to know. It was considered a right of the child to have this information that pertained solely to them. It was believed that the diagnostic information could foster a greater selfunderstanding within the children and allow them to cope better in life. For once aware of one s difficulties it is possible to overcome or manage them more effectively. All of the parents feel it can only be beneficial that their child knows about the ASD diagnosis and are happy to have told them. 3. Giving the Two Sides of the Coin A common theme emerged as each of the parents described the conversation they had with their child about the diagnosis of ASD. The child was told the two sides of the coin, insofar as there are strengths and needs, or advantages and disadvantages, to this condition. A transformative process appeared to have occurred with a deliberate effort made to portray ASD as an ability. All ten parents stressed the importance of being positive but felt it was important to at least mention the difficulties the child also experiences. The information delivered was personalized in an attempt to make ASD specific to the child, such as being really smart, being good at maths, having the ability to think outside the box and being good at computers. In a similar fashion the difficulties associated with ASD were spelled out using specific examples to make it more relatable for the child, such as finding it hard to make friends, being sensitive to loud noises or having difficulty telling how other people are

10 feeling. Clear explanatory language was mostly used. Three parents explicitly told the child you were born with ASD. Four of the participants used the brain as a key point in the conversation, making reference to how the child s brain works differently to others. A recurring issue arose under this theme pertaining to the parents keenness to emphasise to the child that ASD is different but not wrong; an ability and not a disability. A tactic used by five parents was to normalize difference and to convey the idea that all children have difficulties and, in fact, there is no normal. 4. Using the Diagnosis as a Tool for the Future It appears that after sharing the diagnostic information with the child it can then be used as a tool or resource in future communication. The act of using ASD to explain one s needs and strengths is not a single occurrence but, rather, an ongoing process. The parents felt it had opened avenues for them that were not previously there. For instance, they were now able to talk about ASD and use it to explain things to the child. The diagnostic information is often broached during stumbling blocks or knock backs when children can forget about their ASD diagnosis. Being able to remind them of the ASD diagnosis and the reason for these difficulties can make them calm and less self-critical. The majority of the children had few, if any, questions after hearing about the diagnosis with their parents suspecting that more questions will come in the future. Thus, the initial act of telling the child about the diagnosis marks the beginning of an ongoing process where the child or parent can use the information to communicate with the other. Interestingly, it was not just the focal child that benefited from the diagnostic information. Four parents felt it also benefited their other children and helped them to understand their sibling with ASD better. It provided the siblings with an explanation which led them to be more accommodating and also understand what was previously perceived as preferential treatment from parents. Conclusions The main finding is that parent-child diagnostic disclosure is an interactive process, incorporating both parent and child readiness. The challenges experienced by many parents prior to the disclosure, albeit necessary, are outweighed by the benefits to the child and family.

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