How And When To Tell A Child They Have Been Diagnosed With Autism
While experts say there is no ‘right way’ to tell your child they have autism, there are a number of things to consider
For parents of children with autism, the initial diagnosis can be a lot to take in.
While some will be diagnosed at a young age, for others it can take a long time before the condition is confirmed.
So when it comes to explaining it to the child, some families can find themselves struggling to know how or what to say.
And with each child affected in so many different ways, there is no strict path to follow.
The National Autistic Society acknowledges that there ‘isn’t one ‘right’ way to tell your child about their diagnosis’, but it does offer families some points to consider.
Manchester mum Abigail Smith’s son Alfie was diagnosed with autism at the age of eight.
While she’s not specifically sat him down to explain he has the condition, she’s mentioned some of his differences to him and what makes him special.
“I always knew Alfie was a little different and it is a long process, especially as Alfie is verbal and high functioning,” she said.
“I have never sat Alfie down and said to him directly he has autism – I don’t think he would understand and it would probably make him worry more than anything else and to be honest I wouldn’t even know what to say and where to start.
“I’ve tended to give him bits of information as we’re going along telling him he is a little different to others but that’s OK, because nobody is the same and he’s special.”
Communication And Interaction Tips For Asd
There are no hard-and-fast rules on how to communicate with a child with ASD. But many family members have had success with these tips:
It can be challenging to interact with a child or grandchild with ASD. But it is one of the most important things you can do to help that child learn. Research shows that early, frequent, and loving involvement of family members is one of the best ways to help children with ASD.;
If You Find It Hard To Get Diagnosed
It’s not always easy to get an autism assessment. Waiting times can also be very long.
If you’re finding it hard to get an assessment, you could ask to speak to someone else, like another GP this is called getting a second opinion.
It may also help to speak to other people who have been in a similar situation.
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How Is Autism Diagnosed
Doctors check babies and little kids for signs of autism at every checkup. A parent may think that something is wrong and tell the doctor. Maybe the child is old enough to speak but doesn’t. Or a kid doesn’t seem interested in people or plays in unusual ways.
When a doctor thinks a kid might have autism, he or she will work with a team of experts to see if it is autism or something else.
Approaching The Discussion With Your Child
Many parents are unsure about how to speak to their child with autism spectrum disorder about the diagnosis. Parents may fear a number of reactions: that their child will not understand, become angry or depressed, or use ASD as an excuse for why he or she cannot do some things. While some children can find the news upsetting, the information can also come as a relief, as found by a group of researchers that interviewed 9 individuals with high-functioning ASD, aged 16 to 21. Most children reported feeling a sense of shock and disbelief when first informed of the diagnosis, but seemed able to incorporate the idea of having ASD into their identity by the time of the interview. Some expressed that learning that they were on the autism spectrum helped them understand why they had experienced various difficulties and had been treated differently. It also provided a reason for their behavior that they thought others might understand .
Start early with younger children. With younger children, it might be helpful to begin speaking about how there is so much diversity among people and how people do things in their own unique ways. If your child has trouble relating to differences among people, it might be helpful to explore differences among things of special interest such as animals, trains, or cartoon characters. Emphasizing that we all have something that makes us special can help children learn to perceive, communicate, and accept difference.
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Consider Both Age And Maturity
Children can be diagnosed as young as two or three or well into adolescence, so the discussion about when and how to talk to a child about the diagnosis will be impacted by the age of the child and his level of emotional maturity. Some children may be able to grasp the nature of the diagnosis at seven and eight, while for other children, it may seem too abstract, even at 16 years old.
Learn About Autism Services Therapies And Supports
Early intervention is the best way to support autistic childrens learning, development and wellbeing. It can also help children develop the skills they need to take part in everyday activities. Sometimes children who get early intervention need less or no support as they get older.
You can get some therapies and supports before your child has a formal autism diagnosis. Heres how:
- Contact the National Disability Insurance Scheme on 1800 800 110. If your child is aged under seven years, your child can get support through the NDIS’s early childhood early intervention approach without a diagnosis.
- Look into programs and therapies that your child can start without an assessment and diagnosis for example, PlayConnect playgroups or Early Days workshops.
- Get your child started on therapies like speech pathology or occupational therapy while youre waiting for an assessment and diagnosis. Your GP will be able to tell you about Medicare rebates for these services.
- Put your childs name on waiting lists for some therapies and supports while you wait for your childs formal assessment.
If your child is over seven years old, theres a different pathway to get support under the NDIS. Your child will need a formal diagnosis before starting on this pathway.
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Do Use Metaphors And Picture Books
hairdryer brain vs toaster brain explanation1.;“Autism is…?”Target audience:Description2. Ian’s WalkTarget audience:Description3. Can I tell you about autism?Target audience“Can I tell you about Asperger Syndrome?”Description:4. Different Like Me: My Book of Autism HeroesTarget audienceDescription:5. Autistic PlanetTarget Audience:Description
What Should I Do If My Child Is Showing Symptoms Of Autism
Call your pediatrician or your state’s Early Intervention program to schedule an appointment for a formal autism screening. From there, you may be referred to a specialist for a full diagnostic evaluation.
Before your child’s screening, you may find it helpful to fill out the M-CHAT, which stands for Modified Checklist for Autism in Toddlers and is an American Academy of Pediatrics-approved screening tool for autism. Print out your results and bring them with you to discuss with your child’s doctor.
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It Won’t Always Be Like This
“During the hardest times, when my son wasnt sleeping or eating or when he melted down over lights and sounds, I wish I knew it wouldnt always be like this. I wish someone would have told me that the child I have now will grow and change and regress and thrive. You will feel frozen in time at different points. Know that it will get better. And harder. It will change.”
Kate Swenson, Cottage Grove, Minnesota
On The Subject Of Siblings
Chances are that any siblings, even those who are quite young, already have a sense that something is going on with a brother or sister who has an ASD. They may feel embarrassed by their siblings behavior or mannerisms, frightened by their sibling’s outbursts, or sad when their sibling won’t play with them like other children do. They may sense their parents’ worry about a brother or sister, they may worry about a stressed-out parent in turn, or they may feel conflicted about the enormous amount of attention, time, and money being devoted to the child with a disability. 12
Keeping them in the dark can leave them prone to arriving at their own, potentially scary conclusions: My brothers crazy or Its my fault this is happening or I am responsible for taking care of my sister so nobody gets upset. Experts recommend having a conversation with them about their sibling’s autism early on. 13This conversation will likely need to be repeated over the years as their understanding, concerns, and questions evolve.
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How To Parent A Child With Autism
I am not going to lie and say its not going to be hard to parent a child with Autism.; I could only imagine what my parents had to go through with me when I was younger.; I must have been a handful.;;
But you dont have to do it alone.; Seek help from others when you need help the most.;;Here are some more ways to cope with grief after Autism diagnosis
silhouettes of people
Asd Diagnosis: What Do We Tell The Kids
A childs diagnosis of autism spectrum disorder often comes after months or years of worry and a long and painful search for answers. Receiving that final, official word can be very hard, even if a parent expected the diagnosis, or fought fiercely for the evaluation that led to it. Parents may grieve over the loss of the child and family they envisioned and worry about their childs future. 1As they begin to regroup, learning how to navigate education, medical, and insurance systems, they may also wonder: When will;we tell;our child about this diagnosis? When will;we tell his brothers and sisters? How; will we tell them?
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Loss Of Language Or Social Skills
Children with autism may seem unwilling to speak or verbalize even though they used to do so. For example, a baby who used to babble or make nonsense noises might stop as he gets older. Children with autism may also withdraw from social situations even though they used to seem comfortable playing with or around other kids, according to the Eunice Kennedy Shriver National Institute of Child Health and Human Development.
Disclosing Your Child’s Autism To Others
There’s always the possibility that a coach, club leader, or other adult will have reservations about including a child with a disability; many adults have very little experience with autism and may feel they can’t offer appropriate support. Should a parent explain their child’s autism up front? Or should they take a wait-and-see approach?
One approach is a “partial disclosure.” For example, if a child is taking part in a karate class, they may do well most of the time but react strongly if there’s a change in the routine. In that case, it might be useful to explain to the instructor that they might need to warn the child before class about any changes. In this way, you are addressing the issue without revealing the diagnosis.
If you choose to reveal your child’s diagnosis, make sure to point out that, like all people, they have strengths and challenges. Then talk about the accommodations and types of support that can be implemented to help your child succeed and even thrive.
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A Lack Of Interest In Pretend Play
For kids with autism, pretend skills may be absent or lacking. dont use objects for pretend playstuff like picking up a sponge and using it as a pretend phone, she says. Play-feeding a doll or pretending the couch is a truck or train are other examples. If this kind of pretend play hasnt started by 18 months, thats a warning sign, notes the CDC.
How We Told Him He Has Asd
Firstly we didnt. I took the pediatricians approach and left it at Aspergers. ASD sounds so foreign. Aspergers I thought, for him sounded more, clever? maybe?
He was talking to me about his class and a young friend who in his words had a syndrome and that she was special. I told him how wonderful it was to have someone special in his class. He agreed. We talked about differences in children and I asked him if he ever noticed anything different about him. He told me some things he had noticed. This was following;a week of some other leading comments, like I dont have a best friend you know mum, and, I just cant still in class for that long like everyone else I really tried. So I told him.
I explained his super power had a name and it was Aspergers. I asked if anyone he knew had mentioned that word and he couldnt recall. I explained that other great people in history had something similar and we researched this. His favourite was Leonardo Da Vinci. Imagine if I invented a flying machine!.
The I showed him a video explaining Aspergers.
Then we talked about different times in the past when sensory processing and Aspergers had proven to be challenging. ;I asked him if he had any questions. That was it.
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How Should I Tell My Child
There isn’t one ‘right’ way to tell your child about their diagnosis. However, here are some points to consider.;
Who is the best person in the family to help bring up the subject? If your child is comfortable with a grandparent or aunt, it might be a good idea to get them involved too.;
Choose a moment when you’re both in a calm mood and in a familiar place where you both feel comfortable. Autistic children can find it difficult to process new information, especially if they’re feeling anxious, stressed or are in an unfamiliar environment.;
Try to make sure you won’t be interrupted. Your child may need time to think about what you’re saying or to ask questions.;
One of the ways some parents start a conversation about autism is to talk first about differences. For example, you could write a list of family members’ strengths and weaknesses, then talk about what your child is good at and what they find difficult. You could point out that there is a name to this particular pattern of strengths and weaknesses.;
Your child may have met other autistic people. You could explain that although autistic;people;have some things in common, they are all different.;
The following might be helpful:;
What If My Friend Has Autism Spectrum Disorder
Some people with ASD do not feel that they have a disorder and don’t want to change. They’re proud of who they are and they want to be accepted, even though they may have different strengths and weaknesses than most other people.
All people deserve respect. But kids with ASD may be teased, bullied, or left out because they’re different. Bullying and teasing are never the right way to treat other people, but it may be hard to be a friend with someone who has ASD.
Kids with ASD often don’t understand playful jokes. You may need to be very clear when you communicate with someone who has ASD.
Try to be patient and kind. Remember how hard it might be for the person with ASD to understand how to be a friend. Stand up for classmates who are bullied. Tell adults, so they can help protect kids who are bullied.
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Where To Test Your Child For Autism
If you suspect your child may have autism spectrum disorder, start by raising your concerns with your childs pediatrician. If your doctor determines that your child may be showing symptoms of autism, they will refer you to a specialist who treats children with autism spectrum disorder, such as a child psychiatrist or psychologist, pediatric neurologist, or developmental pediatrician, for an evaluation.
How Can My Family Help My Autistic Child
After you get the news that your child has Autism tell all of your family members and prepare them.; Tell them what Autism is and explain how they can help.; Here are some examples:
Help manage their schedules;
Make time for playtime
Introduce your child to their cousins, aunts and uncles, grandparents, etc.;;
I think before I figured out that I had Autism everyone in my family and my extended family knew before I did.; Which was okay because everyone accepted me and no one treated me like I was different.; Everyone in my family jokes with me and treats me like I am normal.;;
I believe that’s why I get along with all of my cousins because they accept me for who I am.; Plus I never take lightly when people treat me like I am an alien from another planet.
question mark written on a dark background in chalk
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Im Great Ive Got Aspergers Syndrome
The child hasnt quite understood what the syndrome is about, and thinks its some kind of special game or title. Your child may feel relieved – at last they know why they have always felt different.
You may like to use these basic tools when youve made the step to share the diagnosis with your child.