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After a child receives a new diagnosis of Autism Spectrum Disorder (ASD), it’s natural for parents to be full of questions. The good news is that the autism community is full of parents who understand ASD and are eager to share their knowledge with those who are new to the community. We compiled 14 expert tips from individuals with autism, autism professionals, special education teachers, and parents of children with autism and special needs:

 

Chris Bonnello – Autistic Not Weird

Chris Bonnello is the owner and author of Autistic Not Weird. He was diagnosed with Asperger Syndrome when he was 25 years-old. Prior to his diagnosis, Chris had experience teaching both primary education and special education. Since receiving his diagnosis, he has become an award winning writer and an international speaker on autism. Chris says:

“I guess that the most important piece of advice I can offer to families is to define their children by their strengths rather than their weaknesses. It’s a very easy trap to focus on just the deficiencies and the struggles when it comes to autism, but if everything a child does is focused on their weaknesses, they’ll never get a chance to develop what they’re really good at. And a child’s self-esteem can rocket once they see themselves being really good at something.

There were plenty of reasons to have been negative about my prospects, going by the developmental report written about me when I was 4. I’m very glad my parents and teachers didn’t spend my childhood years just being sad about all my “bad points, “ and then being surprised when I didn’t reach my potential as a result of not focusing on the good.”

 

Erin Tracy – Behavior in Balance

Erin Tracy is a Board Certified Behavior Analyst and the founder of Behavior in Balance – a website that provides educational resources for parents. She has over 12 years of experience working with both teens and children with autism. Erin says:

“I think the biggest piece of advice I could give parents is to educate themselves.  This is for a couple of reasons.

  1. There is so much noise and inaccurate information out there, that it can be difficult to know what to do or how to best advocate for a child.  Researching reputable organizations and those that promote using evidence based practices is a good place to start.
  2. Sometimes I feel like there’s a perception that we, as clinicians, have it handled.  This may be our own fault for creating that perception or not involving parents enough. The truth is, parents play such an important role in a child’s progress. When we leave, who gets to manage challenging behavior?  

There are a lot of hours in a week outside of therapy time. Using that time to teach a child new skills or manage behavior can be invaluable to progress.  A quality BCBA should be providing this training but supplementing in-session parent training with classes or tutorials can be highly beneficial.

It’s important for parents to learn and understand what evidence based treatments look like, what their child’s rights are for services and in school, and how to carry out behavior techniques and strategies for teaching their child.”

 

Jessica Watson – Four Plus an Angel

Jessica Watson is the author and owner of Four Plus an Angel where she shares stories about her life, parenting, and autism. Jessica has experience raising a child with autism and shares her autism story on her website. Throughout Jessica’s time raising a daughter with autism, she has gained valuable knowledge. Jessica says:

“Appointments or school meetings that involve discussing test results or progress reports related to your child can be emotionally draining. Whether your child made little to no progress or added a new diagnosis to their list, leave that meeting reminding yourself that your child is the exact same, uniquely awesome person they were when you walked into the meeting. No test result or expert opinion will ever change that.”

 

Gina Badalaty – Embracing Imperfect

Embracing Imperfect, created by Gina Badalaty, offers many great resources for healthy eating and autism. Gina has experience raising a daughter with disabilities and autism and has found healthy eating habits can make a major difference in children’s lives. Gina says:

“Kids on the autism spectrum quite frequently suffer from food sensitivities and gut health issues. We have learned, the hard way, that my daughter is reactive to most forms of cow milk. It contains a protein – casein – that disturbs her sleep pattern. For many years, she could not sleep through the night, yet removing products containing cow milk reset her system and she began sleeping through the night in just 2 weeks.

If your child is experiencing behaviors and issues including sleeplessness, eczema, constipation, diarrhea, behavioral outbursts and more, you might want to see if they are reacting to foods that are not good for their system or if their gut is out of balance. A healthy, clean, low sugar diet can make a world of difference to your child!“

 

Mary Winfield – Growing as They Grow

Mary Winfield has experience working in Special Education as well as raising two children with special needs. She is the owner and author of Growing as They Grow. She writes blog posts on a variety of topics and offers advice on many topics relating to parenting. Mary says:

“I think my biggest piece of advice for people wading through the trenches of special needs parenting is to trust yourself. You know your child better than anyone else, and you are their momma for a reason. They need what you have to offer. People will tell you that you are doing it wrong, that you are messing them up, and that if you would just do “insert unsolicited advice here,” that it would be much better. Only listen to advice from a few trusted people, and then weigh it against your heart and what you know about your child. You are not going to mess them up. If you love them and never give up on them, they will have all they need.”

 

Amy H – Taking it Day by Day with Developmental Delays

Amy H is the author of Taking it Day by Day with Developmental Delays (and Autism) and is the mother of a son with autism, physical impairments, and mental impairments. In her blog posts, Amy discusses her adventures through life raising her son and shares helpful information relating to autism and developmental delays. On her website, she writes a letter to special needs parents. In this letter Amy writes:

“Don’t let the stress of raising this child eat you up inside. Don’t let it be the only thing going on in your life. You need distractors, and a chance to get out of your head. Take breaks from your child when you need them. Sometimes we just have to put him in his room and walk away to decompress. It’s okay. Please don’t try to bear the brunt of everything, because you don’t want to trouble anyone else with your child. Let teachers help. Let therapists and social workers help. They will lighten your heavy load. Let them be a part of your child’s life, they will make your journey more enjoyable.

Search your entire county and beyond until you can find a support group, and if you don’t find one, create your own. Seek out a counselor to touch base when you need to. When your child goes to school, get to the gym, or take a walk to combat stress. Get together with friends at least a few times a year. You need to socialize with others and feel normal again. Communicate at all times any stresses you are feeling to your partner/spouse, parents, siblings and don’t keep this stuff inside. Try to stay hydrated, get enough sleep and eat healthy when you can to help your overall well being. His pediatrician used to tell me, “You can’t take care of him, if you don’t take care of yourself.”

 

Tameika Meadows – I Love ABA!

Tameika Meadows is a Board Certified Behavior Analyst and the blog owner of I Love ABA! Her blog posts offer many tips and resources for understanding autism and ABA therapy. One blog post in particular offers excellent advice and strategies for making life easier for both parents and their children. This post is titled “My Top Ten List” and explains what Tameika believes are the essentials to everyday life for a child with autism. Some of the essentials that she discusses are creating structure and routine, creating visual daily schedules, using a choice board, and creating a cool down area. She goes further into detail about each of the top ten essentials and provides examples of how to apply them to everyday life.  

 

Jolene Philo – Different Dream Living

Different Dream Living is a website created by Jolene Philo which offers resources for those who are caring for others with special needs. She has experience raising a son with special needs and has gone on to become a published author and speaker for special needs. Jolene says:

“On the days when parenting your child contains no Hallmark moments, remember one thing. You stand between your child and the big, scary world he can’t understand, but you don’t have to stand alone. By seeking resources, advice, and support for your child you will become a better advocate and protector. So ask for help when you need it and give help when you can.”

 

Kate Hooven – The AWEnesty of Autism

Kate Hooven blogs about her life raising three children, one of whom was diagnosed with autism. Her website, The AWEnesty of Autism is filled with honest accounts of everyday life raising her son with autism, as well as tips to help other parents in similar situations. Kate, along with the help of her son and niece, developed a poster to help others befriend children with autism:


Credit: Kate Hooven. *Disclaimer: Per Kate’s request, no edits may be made to this poster.

 

Erin Hagey – You AUT-a-Know

You AUT-a Know, created by Erin Hagey, shares the knowledge that she has gained from her experience as a Special Education teacher. She bases her classroom on ABA principles and offers many resources for other Special Education teachers. Erin Hagey says:

“Look at your IEP team as just that, a team. Working with multiple service providers can be tough, but the more we can work together, the more benefit our students will receive. I love working alongside families to develop goals and objectives to make our students more successful at school, home, and in their communities. Working together as a team allows all members to share what is important for the growth and development of our students and I find that it makes for greater student achievement. Doing this is not always easy, but I suggest using open, honest communication as a key tool to build a collaborative team that can best support our students.”

 

Rebecca Branstetter – Thriving School Psychologist Collective

Rebecca Branstetter is the founder of Thriving School Psychologist Collective. Thriving School Psychologist Collective is a community of school psychologists who are dedicated to improving mental health services in public schools. Rebecca has over 15 years of experience as a school psychologist. She has written many blog posts and books sharing what she has learned throughout her career and also offers online courses. Rebecca offers advice for families deciding what school support is best for their children:

Getting a diagnosis of Autism can be understandingly overwhelming for parents. One of the first things to do to reduce overwhelm is to build your child’s school support team and find a “guide” in navigating the process for garnering the right supports at school. In the public schools, the school psychologist is a professional who can serve as a guide in the process. It is not always widely known, but public school psychologists are available to support families from ages 3-21, even if your child is not enrolled in a public school. You can contact your child’s local school district to find out who the school psychologist is.

One reason starting your journey in the world of deciding what the best school support options are with your school psychologist is that they are experts in not only diagnostic assessment, but also helping parents navigate the sometimes complex and daunting menu of options for their child. From general education all the way to special schools for students with Autism, the choices and process for getting the “just right” level of support can leave parents feeling overwhelmed and frustrated. Whether a medical professional or the school psychologist provided the initial diagnosis, ask for an appointment to meet to discuss the new-found diagnosis and learn the next steps. The school psychologist may also have knowledge of community agencies that offer ongoing support to parents of children with Autism.”

 

Kara Dedert – Live Better

Kara Dedert is mother to five children and the author of Live Better. One of her sons was born with special needs, and she discusses many topics relating to special needs parenting. She offers wise words and tips for parents in similar situations as her own, as well as a Facebook group for other mothers raising children with special needs. In one of her blog posts titled Your Child Needs Friends Too, Kara writes, “Not only does my son need friends, they need him.” It is important to remember that children on the spectrum and neurotypical children can both benefit from having a friendship with each other.

 

Alicia Trautwein – The Mom Kind

Alicia Trautwein is the author and creator of The Mom Kind. She has experience raising four children with different diagnoses, and she writes blog posts discussing topics relating to autism, special needs, parenting, and managing money. Alicia says:

“Remember, your child is the same child who walked into that office without a diagnosis that walked out with one.

Not only is it okay to grieve, it is normal.  We all have different steps in the cycle of grief (denial, shock, anger, sadness, depression, even relief).  You are not necessarily even grieving your child, but the idea of who your child might have been in your head.  What is important is that you actively move through the cycles of grief into action. As Dr. Rick Solomon of The Play Project says, ‘There is a feeling much worse than grief and that is the guilt of looking back on what you should have done.

You are the expert in your child’s life and their strongest advocate.  Though you may not be a doctor, you’ve known your child since day one. You know what they need and are the only one who is going to fight for your child’s needs. So do not doubt yourself!’”

 

Stephanie DeLussey – Mrs. D’s Corner

Mrs. D’s Corner is a website created by Stephanie DeLussey. On this website, Stephanie writes blog posts and provides resources for teaching Special Education. In her blog posts, she shares knowledge that she has gained from her experience as a Special Education teacher on topics such as disability awareness, parent communication, data collection, schedules, and more. Stephanie says:

My biggest piece of advice for special needs families is for them to 1. Become involved in the community where they live, and 2. For parents to become involved in their child’s education with information from outside of the school district. Do your homework, study up on the laws and what rights you and your child have under IDEA. In my experience, most families don’t know how much power they hold over school districts when it comes to asking for and getting the services their child needs to succeed.”

 

When raising a child with autism, it’s important to remember that many other parents are experiencing the same challenges. Thankfully, the autism community is full of parents and professionals who are happy to help others along the way in their own journeys with ASD.

 

For autism tips, check out our Autism Travel Guide.

  1. Autism Spectrum Disorder (ASD) represents a group of developmental disorders: autistic disorder, Asperger’s syndrome, pervasive developmental disorder not otherwise specified (PDD-NOS), and childhood disintegrative disorder.
  2. According to the Centers for Disease Control and Prevention (CDC), 1 in 68 individuals are affected by ASD.
  3. Autism Spectrum Disorders can be diagnosed as early as 18 months to 2 years of age.
  4. Although reliable diagnoses can be given at 18 months to 2 years, the average child isn’t diagnosed with autism until 4 years of age.
  5. Scientists are discovering more innovative ways to diagnose autism. In 2017, a team of researchers were able to use brain scans and artificial intelligence to predict which 6-month old infants would go on to be diagnosed with ASD. Impressively, they performed at a 96 percent accuracy rate.
  6. No case of autism is exactly the same as another. Each person on the Spectrum is a unique individual.
  7. People of all races, ethnicities, and socioeconomic groups are affected by Autism Spectrum Disorder.
  8. Individuals on the Autism Spectrum range from having very mild symptoms to very severe developmental delays.
  9. Autism is about 4.5 more common in males – data shows that 1 in 42 boys have autism compared to 1 in 189 girls.
  10. New Jersey has the highest rate of autism in the U.S., with 1 in 28 boys being affected.
  11. In autism terminology, milder cases of the disorder are said to be in “high functioning” individuals while more severe cases are said to be in “low functioning” individuals.
  12. Autistic disorder typically describes those who are on the “low functioning” end of the Spectrum.
  13. Individuals with autistic disorder often struggle with severe deficits in speech, communication, social skills, motor functioning, and adaptive skills.
  14. Adaptive skills are the practical, day-to-day skills needed to live independently: bathing, getting dressed, brushing teeth, feeding oneself, and more.
  15. Asperger’s syndrome typically describes those who are on the “high functioning” end of the Spectrum.
  16. Children and adults with Asperger’s syndrome commonly struggle with social interactions or restricted interests, but don’t usually have difficulties with language or cognitive development.
  17. Sometimes referred to as ‘atypical autism,’ PDD-NOS is often thought of as being in between Asperger’s syndrome and autistic disorder. It’s common for those with PDD-NOS to struggle with communication, social behavior, and repetitive movements.
  18. Childhood disintegrative disorder, also known as disintegrative psychosis, is the rarest of the Spectrum disorders. It’s characterized by severe development deficits, often in children who were developing normally but then quickly regressed between ages two and four.
  19. These disorders were all placed under the umbrella term of Autism Spectrum Disorder in the DSM-5 (Diagnostic and Statistical Manual of Mental Disorders).
  20. Restrictive and repetitive behaviors are a common sign of ASD. These might include hand flapping, rocking back and forth, and fixations on certain objects.
  21. It’s common for individuals on the Spectrum to have difficulties with language or be completely nonverbal.
  22. Children with Autism Spectrum Disorder might show typical language development and then quickly lose their ability to speak in words or phrases. This is called regression.
  23. Many children who are nonverbal at the age of four go on to overcome their severe language delays, according to a large study of 535 nonverbal children with autism.
  24. Children with autism often struggle with transitions. A slight change in routine can lead to meltdowns or temper tantrums.
  25. Echolalia describes a behavior involving repetition of words or phrases. It’s a common sign of Autism Spectrum Disorder.
  26. Children on the Autism Spectrum often avoid eye contact.
  27. Some children with autism may engage in aggressive or self-injurious behaviors, like head banging against walls or floors when upset.
  28. Sensory sensitivities to lights, sounds, and textures are commonly seen among those with autism.
  29. Many people with autism are extremely gifted in certain areas, like mathematics, music, or art.
  30. Micah Miner, a young gymnast with autism, is a prime example of this. By the time he was nine years old, Micah competed in the gymnastics National Championship for the third time.
  31. Epilepsy is common among individuals with Autism Spectrum Disorder, seen in up to a third of the autism population.
  32. April is Autism Awareness Month.
  33. Back in 2007, the United Nations named April 2nd as international Autism Awareness Day.
  34. To help raise autism awareness, Autism Speaks launched the Light It Up Blue campaign.
  35. To show support for autism, landmarks like the White House, the Empire State Building, the Great Pyramid of Giza and more will light up blue on April 2nd.
  36. There’s no single cause of autism.
  37. Some of the high-risk factors for autism include genes and genetic mutations, chromosomal conditions, family factors, environmental influences, prenatal influences, and birth complications.
  38. There are treatments that can help ease the symptoms of ASD, but there is no cure for autism.
  39. Applied Behavior Analysis therapy is the leading treatment option for young children on the Spectrum.
  40. Applied Behavior Analysis (ABA) involves figuring out the motivation behind certain behaviors, and then applying this to reduce undesirable behaviors and increase positive ones.
  41. Decades worth of scientific research shows that ABA therapy is effective at helping children with autism make significant strides to overcome their developmental delays.
  42. One of the main techniques used in ABA is DTT (discrete trial training). Basically, DTT breaks down tasks into small components. Children build up skills by tackling each smaller component one-by-one.
  43. Another main technique used in ABA is NET (natural environment training). Children might work on many of the same goals as in DTT, but in a more natural play environment.
  44. Generalization is a common term used in ABA to describe a child’s ability to naturally implement behaviors and skillsets in a variety of settings.
  45. ABA therapy is endorsed by the U.S. Surgeon General, the American Academy of Pediatrics, the National Institute of Mental Health, and the Autism Society of America.
  46. The earlier ABA therapy is started, the better the outcome. Children who start receiving ABA therapy at 2 years old make more significant changes than those who start ABA at later ages, according to research.
  47. Ole Ivar Lovaas is known as the pioneer of Applied Behavior Analysis.
  48. ABA therapy used to be seen as controversial due to aversive therapy techniques. However, nowadays, there are no aversive procedures used in ABA.
  49. ABA therapy focuses largely on positive reinforcements. ABA therapists will reinforce desirable behaviors with a child’s favorite toys, snacks, and social praise.
  50. ABA therapy is an all-encompassing approach to overcoming the deficits associated with autism. Target areas of ABA therapy include speech, nonverbal communication, social skills, play skills, adaptive skills, toilet training, food therapy, and much more.
  51. Board Certified Behavior Analysts (BCBAs) are Master’s level health practitioners. They create the child-specific treatment plans implemented in ABA therapy centers.
  52. ABA therapists provide one-on-one therapy for children in ABA autism facilities.
  53. Registered Behavior Technicians (RBTs) are ABA therapists who have gone on to complete 40 hours of training and pass the RBT exam.
  54. Other autism therapies include speech therapy, occupational therapy, physical therapy, art therapy, and music therapy.
  55. There is currently no scientifically proven link between autism and vaccines.
  56. Individuals with autism are particularly vulnerable to being bullied. Studies have found that over 60 percent of children on the Spectrum have experienced bullying.
  57. Data shows that the most severe bullying tends to occur among children in 5th to 8th
  58. There are a number of tips recommended by autism experts to help a child on the Spectrum who is being bullied, including identifying emotions and creating bully-proofing plans. See them here.
  59. Unemployment rates are a big issue in the autism community. A report out of the A.J. Drexel Autism Institute found that a third of young adults with autism didn’t have a job or educational plans.
  60. Integrate Autism Employment Advisors is a program that helps adults on the Spectrum lock down jobs through job coaching boot camps and networking opportunities. The organization also reaches out to employers to encourage more hiring of autistic individuals.
  61. Rett’s Syndrome is often confused with Autism Spectrum Disorder. Rett’s Syndrome, a rare neurological disorder that mainly affects girls, is characterized by a rapid loss of speech, coordination, and use of the hands.
  62. Research has shown that parental interactions with babies can ease the signs of autism as the baby progresses to toddler age.
  63. Temple Grandin, one of the most prominent voices in the autism community, didn’t speak until she was three and a half years old.
  64. Temple Grandin went on to become an author and speaker on autism and animal behavior, as well as a professor of Animal Science at Colorado State University. Many people view her as showing the world the true potential of those on the Spectrum.
  65. Temple Grandin has inspired many with her well-known quote, “Different, Not Less.”
  66. Some other well-known people considered to be on the Spectrum include Susan Boyle, John Elder Robinson, Daryl Hannah, and Andy Warhol.
  67. Technology can be a huge help for individuals with autism who struggle with communication. There are a number of iPad apps designed to help nonverbal children communicate their wants and needs.
  68. There are also daily scheduling apps for iPads to help ease the anxiety associated with transitions.
  69. Some common autism assessments for an autism diagnosis include M-CHAT (Modified Checklist for Autism in Toddlers), CARS (Childhood Autism Rating Scale), ASQ (Ages and Stages Questionnaire), and ADOS-2 (Autism Diagnostic Observation Schedule – 2nd edition).
  70. The ADOS-2 is largely seen as the gold standard of diagnostic assessments for autism.
  71. Autism Spectrum Disorder can be diagnosed by developmental pediatricians, pediatricians, neurologists, and psychologists.
  72. Autism is becoming more included in pop culture, with shows like Atypical and The Good Doctor making their ways to Netflix and ABC.
  73. In April of 2017, Sesame Street debuted Julia: a new four-year-old character with autism. The goal was to familiarize children with the differences they might notice in their classmates who have autism – and to know that different is okay.
  74. Some people believe that autism is the result of bad parenting or child neglect. This is not the case.
  75. It’s common for children with ASD to only like eating two or three foods. Therapists can work through a slow process of introducing new textures and foods to build up to a more nutritious diet.
  76. The autism community has a strong online presence. Many parents, therapists, and individuals on the Spectrum run blogs to educate and connect with others. Check out some of the most outstanding autism blogs here.
  77. Weighted blankets can be an anxiety-reducer for some kiddos on the Spectrum. Weighted blankets provide a gentle pressure that eases the sensory issues associated with ASD.
  78. Sensory swings provide a number of benefits. They can encourage motor planning, balance, and core stability.
  79. The largest-ever study on twins and autism found that if one identical twin has autism, there is a 76 percent chance that the other identical twin will also have autism
  80. The same twins study found that same-sex fraternal twins have a 34 percent chance of both having an autism diagnosis, while opposite-sex fraternal twins share an 18 percent chance of Autism Spectrum Disorder.
  81. Autism was first described by Dr. Leo Kanner in 1943.
  82. Reporting on 11 children, Dr. Kanner’s initial observations on autism described the children as having “a powerful desire for aloneness” and “an obsessive insistence on persistent sameness.”
  83. Before Dr. Kanner’s work, autism was often confused with schizophrenia.
  84. Autism is the fastest-growing developmental disorder. The prevalence of ASD in children increased by 119.4 percent from 2000 to 2010.
  85. In 2014, researchers identified a whopping 60 genes with more than a 90 percent chance of increasing the risk for autism in a child. Previously, just 11 genes had been linked with Autism Spectrum Disorder.
  86. Just last year (2017), an analysis published in Nature Neuroscience identified 18 new genes linked with autism.
  87. In September 2018, the National Institutes of Health awarded nine research grants to the Autism Centers of Excellence (ACE) program. The grants totaled nearly $100 million.
  88. The nine research grants will delve into improving autism treatments, identifying the early signs of autism by studying social interaction, how autism differs between girls and boys, and more.
  89. The Autism Science Foundation (ASF) is a nonprofit organization with a mission to further scientific research on Autism Spectrum Disorder.
  90. ASF provides funding and other resources/assistance to organizations and scientists conducting autism research.
  91. Many top colleges and universities offer degree programs in Applied Behavior Analysis. Some of the best ABA programs can be seen in this list.
  92. There are a number of books on autism that have made the New York Times Best-Seller List, including Look Me in the Eyes by John Elder Robison and The Reason I Jump by Naoki Higashida.
  93. Jordan Keller, a 12-year-old on the Spectrum, published a book called Jumbled Pieces: Autism. His mission is to help others understand what it’s like to grow up with autism.
  94. Insurance oftentimes covers the majority of the cost for ABA therapy, speech therapy, and occupational therapy.
  95. Unfortunately, in some states, Medicaid provides no coverage for ABA therapy. This leaves many families in need of autism services with little to no options.
  96. Congress passed the ABLE (Achieving a Better Life Experience) act in 2014.
  97. Under the ABLE act, individuals with disabilities are given the opportunity to open tax-free savings accounts without risking eligibility for Social Security and other government programs.
  98. Many children sit on waitlists to see a developmental pediatrician for 9 months or more. This delays the start of therapy and can significantly hurt a child’s ability to overcome developmental deficits.
  99. Waitlists are also an issue at many ABA centers.
  100. People on the autism spectrum are extraordinary, gifted, and loving human beings!