How And When To Tell A Child They Have Been Diagnosed With Autism
While experts say there is no âright wayâ 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 âisnât one ârightâ way to tell your child about their diagnosisâ, but it does offer families some points to consider.
Manchester mum Abigail Smithâs son Alfie was diagnosed with autism at the age of eight.
While sheâs not specifically sat him down to explain he has the condition, sheâs mentioned some of his differences to him and what makes him special.
âI always knew Alfie was a little different and it is a long process, especially as Alfie is verbal and high functioning,â she said.
âI have never sat Alfie down and said to him directly he has autism â I donât think he would understand and it would probably make him worry more than anything else and to be honest I wouldnât even know what to say and where to start.
Medical Testing And Treatments
Routine medical tests are usually performed by traditional pediatricians, but these exams rarely reveal underlying medical problems that are often associated with autism, such as gastrointestinal problems, nutritional and metabolic deficiencies, toxic metal burden, and immune dysfunction. Unfortunately, many physicians believe, though incorrectly, that the only useful medical treatments are psychiatric medications to reduce seizures and behavioral problems.
Genetic testing for Fragile X syndrome can help identify one possible cause, and this testing is typically recommended when there is IDD in the family history.
The Autism Research Institute supports an integrative medical approach to treating individuals on the autism spectrum. This approaches often includes:
- Thorough medical evaluation for undetected underlying disease
- Nutritional support
What To Do Next
- Attend one or more parent support groups, or join a parent email listserve: Parents can be a wonderful source of support and information.
- If you dont already have one, get a proper diagnosis you will need it to secure appropriate services. Some practitioners will give you a softer diagnosis in order to spare your feelingsthis is not actually a kindness, because it will impede your ability to get the services your child needs and is entitled to.
- Contact your states Developmental Disabilities program and apply for services. Be persistent.
- Contact your local school district and ask about school programs. See what they have to offer.
- Find a local physician who offers an integrated medical approach to autism. Some physicians will be open to medical and nutritional testing and medical and nutritional treatments, but others will not find one who is willing to help your child, as opposed to just monitoring the severity of your childs problems. Do not take your child to a physician who does not support you or respect your viewpoint.
- Attend the Autism Research Institutes free online webinars and continuing education events.
- Make sure you still find some time for your other children and spouse/significant other. Having a child with autism can result in many challenges, and you need to be prepared for the long term.
- Continue trying to learn all you can. Good luck!
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Asperger Syndrome And Education
Some children with Aspergers syndrome find mainstream education difficult.
Some find that bullying is an issue that they feel lonely or are unable to keep up with their peers.
This is not to say children with Asperger syndrome are necessarily less intelligent, and many actually have a higher than average IQ, but learning new skills, concentrating and just being within a classroom environment can be challenging for some.
What Age Do Autistic Children Talk
What Age Do Autistic Children Talk? Autistic children with verbal communication generally hit language milestones later than children with typical development. While typically developing children produce their first words between 12 and 18 months old, autistic children were found to do so at an average of 36 months.
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Heres Why That Number Is So Low And All The Ways Im Lucky To Have Made It To 36
Some caveats. First: Not all studies on autism and mortality agree on the average age of our deaths. If you think Im being overly dramatic by picking one that appears to cite the youngest age, here are some otherrecentstudies with more positive results. One says 39 is the average life span another says 54. By positive, though, I mean studies that determined autistic people live longer, on average, than 36, but still found that we die significantly earlier than our non-autistic counterparts.
Second, whenever I write about autism, theres always someone who shows up to point out that Im not really autistic enough to count or that Im not the kind of autistic person that people are thinking about when they think of the tragedies and pressures that face people on the spectrum.
Because I can speak, work, and maintain a semblance of a social life and because I am able to hide my most severe symptoms from other people they assume that I am too high-functioning to be considered autistic. Before that happens here, let me say that, yes, I am probably at a lower risk of death than many autistic people. Not because Im higher-functioning or because my autism is mild, but because I happened to be born into a certain body and a certain set of circumstances.
Are Siblings At Greater Risk For Autism Spectrum Disorder
The truth is that genetics do play a role in autism. When one child is diagnosed with ASD, the next child to come along has about a 20% greater risk of developing autism than normal. When the first two children in a family have both been diagnosed with ASD, the third child has about a 32% greater risk of developing ASD.
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Physical Activity For Aspergers
Regular exercise is important for everybody and people with Asperger syndrome can benefit from a greater sense of self-esteem and wellbeing through exercise.
Some people may prefer individual sports or exercise as opposed to team games because working with others in this environment may be challenging for them.
Everybody is different though.
Exercise does not have to be strict or comprised of set activities simply running around and keeping active is still worthwhile exercise.
Large Head Size Is A Red Flag
Recent findings published in the Journal of the American Medical Association suggest that the brains of children with autism develop differently from an early age. Researchers discovered that most infants who were later diagnosed with autism had small head circumferences at birth but had heads and brains much larger than normal by 6 to 14 months. “Some of them went all the way up to the 90th percentile in just a few months,” says study coauthor Natacha Akshoomoff, Ph.D., an assistant professor of psychiatry at the University of California, San Diego. Those who ended up with the most severe form of autism were found to have the most dramatic acceleration of brain growth during infancy.
Pediatricians don’t always measure head circumference at well-baby visits, so it’s wise to request it. However, don’t panic if your baby’s head size is above the norm. Some babies just have big heads. “Rapid head growth is not a way to diagnose autism,” Dr. Akshoomoff points out, “but it means that a child should be watched closely to be sure that she meets speech and behavioral milestones.”
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News & Recent Articles
Steven’s new book, The Science of Discovery, has finally been released. In it, he enumerates an entire new scientific method, along with proof. He’s also just launched a sister site to this one his author site: stevenpaglierani.com . On it, you’ll find everything from expanded, color versions of his book’s drawings to his new blog: Musings.
A Roadmap For Recovery Of Child With Autism
To cure autism at home, school, psychological centers or hospitals you just need to create a roadmap for recovery, you just need to identify the needs and what is missing in the body of the child with autism and what is bothering him.
Make a treatment plan with the help of therapist of your child about how to take away triggering factors and give his body what he needs. Then the body of the autistic child does the rest.
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Communication Signs Of Autism In Toddlers
Some common communication signs may include:
- No single words at 12-15 months and no two word phrases by 24 months
- Repeats words without understanding the meaning
- Do not respond to their own name
- Less likely to point at objects or share objects with others
- A visible loss of language or social interactions between 15 and 24 months
Trust Your Instincts Even With The Doctors Advice
What I wish I knew way back then is that its OK to get a second opinion when your gut tells you the doctor is wrong. We knew that Gavin had autism. Yet, we were told he had ADHD, that he had anxiety and depression. It took his first psychiatric hospitalization at age 8 for a psychiatrist to finally say he thought Gavin had Aspergers. We were always told, Why is a diagnosis so important to you anyway? Its just a label. Because the right diagnosis means the proper treatment. Now he has a job, hes involved in school activities. Hes going to college in the fall to become a chemistry teacher.
Shannon Smyth, Lake Ariel, Pennsylvania
Lacy Gunter, Greenwood, South Carolina
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Know That Medical Issues Can Be Involved
I wish I had known about the invisible medical issues of autism right from the start. For years, I had no idea that gastrointestinal dysfunction, including constipation, acid reflux, inflammation and pain, could dramatically affect my sons sleep patterns, mood, irritability, aggression, attention, and even communication. Our son had to power through those problems all by himself on a daily basis, and it breaks my heart that we never suspected the cause of many of his struggles.
Janet Lintala, West Virginia
Be Grateful For The Strong Connection You And Your Child Will Forge
In reflecting over the last 24 years of our journey, I will say this: My son gives me 100 kisses and hugs every day, he is always happy to see me and he will always be with me. He doesnt lie and he doesnt judge. He is welcoming to anyone that wants to enter his world. On the other hand, my father sees me about twice a year since we live 1,000 miles apart. So which dad is better off? Its not better or worse, its just different. Once you understand that, your road will be smoother.
Scott Sanes, Great Barrington, Massachusetts
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What Is The Outlook For People With Autism Spectrum Disorder
In many cases, the symptoms of ASD become less pronounced as a child gets older. Parents of children with ASD may need to be flexible and ready to adjust treatment as needed for their child.
People with ASD may go on to live typical lives, but there is often need for continued services and support as they age. The needs depend on the severity of the symptoms. For most, it’s a lifelong condition that may require ongoing supports.
A note from Cleveland Clinic
Through research, there has been much that has been learned about autism spectrum disorder over the past 20 years. There is ongoing active research on the causes of ASD, early detection and diagnosis, prevention and treatments.
Last reviewed by a Cleveland Clinic medical professional on 12/29/2020.
Early Signs Of Autism In Babies May Include:
- Smiling rarely in social situations
- Unexpected reactions to new faces
- Little or no eye contact
- Doesnt respond to their name
- Doesnt turn their head to locate sound or react to loud sounds
- Overreacts to sounds
- Displays a lack of social anticipation. For example, baby doesnt reach out their arms to be picked up, or doesnt seem to understand the game of Peek-a-Boo.
- Doesnt use chatter or babble
- Doesnt use gestures such as pointing or waving in context.
- Dislikes being cuddled or touched
- Displays repetitive and unusual body movements.
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What Does An Autism Diagnosis Mean For My Child
An autism diagnosis can result in some beneficial effects, but also comes with associated risks, disadvantages, and contraindications. Once your child is diagnosed with autism, you can expect your doctor to devise a specific treatment plan, comprised of therapy and/or medication to help your child function more easily in daily life. You can also seek specific guidance and support for your child to thrive at school. Despite these benefits, a diagnosis of autism also come with the risk of social stigmatization for the child. There is also a range of physical and mental-health conditions that frequently accompany autism including but not limited to: gastrointestinal problems, epilepsy, ADHD, anxiety, and depression.
Dietary Planning For Aspergers
People with Asperger syndrome sometimes have difficulty with eating and may only like a small range of foods.
Poor diet can lead to health problems in the future and may make some symptoms and behaviours worse.
Some people report that eliminating certain foods such as gluten or sugar from the diet of someone with the condition, or adding supplements for Asperger syndrome has improved their behaviours or helped them feel better, but there is little evidence to support these claims.
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So What Do I Want You To Do About It
Ive spent my whole life being told that non-autistic people are so brilliant and intuitive when it comes to social issues. Like many autistic people, though, I havent always felt like Ive seen much empathy, compassion, or understanding. And the evidence is starting to suggest that were not wrong about the level of judgment and stereotyping we face.
If you want to understand people on the spectrum, Id recommend starting with some of the following: Listen to us. Invest in our work. Invest in science and actions that actually make our lives better now instead of chasing a hypothetical cure. Dont kill us. Think twice about sympathizing with the parents who do kill us. Dont rush to armchair-diagnose every mass murderer with autism like what happened with the most recent Florida school shooting. Give your money to marginalized autistic people instead of charities like Autism Speaks, which dedicate only a small percentage of their budget to programs that will actually help autistic people. Think about how hard were working to exist in your world and consider meeting us halfway.
Tell us we dont bore you. Tell us we dont drain you. Look at us somewhere other than the eyes were really not comfortable with eye contact and are tired of being forced to make it for your benefit and tell us that we deserve to be alive.
And then act like it.
Helping Your Child With Autism Thrive Tip : Provide Structure And Safety
Learning all you can about autism and getting involved in treatment will go a long way toward helping your child. Additionally, the following tips will make daily home life easier for both you and your child with ASD:
Be consistent. Children with ASD have a hard time applying what theyve learned in one setting to others, including the home. For example, your child may use sign language at school to communicate, but never think to do so at home. Creating consistency in your childs environment is the best way to reinforce learning. Find out what your childs therapists are doing and continue their techniques at home. Explore the possibility of having therapy take place in more than one place in order to encourage your child to transfer what he or she has learned from one environment to another. Its also important to be consistent in the way you interact with your child and deal with challenging behaviors.
Stick to a schedule. Children with ASD tend to do best when they have a highly-structured schedule or routine. Again, this goes back to the consistency they both need and crave. Set up a schedule for your child, with regular times for meals, therapy, school, and bedtime. Try to keep disruptions to this routine to a minimum. If there is an unavoidable schedule change, prepare your child for it in advance.
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Dont Worry About What Other People Are Thinking
The most freeing moment of this journey for us was when we stopped worrying about public appearance. Your child needs for you to be 100 percent in tune with them and what they are experiencing, not worried about how you are perceived.
Sarah McKamey, Manchester, Tennesseee
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Social Impact Of Living With Autism
Autistic people often find it difficult to socialize. However, its incredibly important for a person living with ASD to get adequate social support. Social support can come from family, friends, and local support group meetings in their area.
Joining a local support group doesnt just provide help for the person living with ASD but for their families too. You get to meet other families in similar situations at support group meetings, especially families who might have more experience dealing with ASD. They may offer you valuable tips and tricks.
According to the Individuals with Disabilities Education Act , children with conditions such as ASD are eligible to get certain free or low-cost services to help with their condition. These services include physical therapy, speech therapy, medical evaluations, and other services.
If you suspect your child has ASD or other developmental challenges but hasnt gotten a diagnosis, the IDEA allows children under 10 to benefit from these services.
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