Awareness vs. Acceptance

As a parent, I’ve found over the past 15 years since J was diagnosed that many more people are aware of autism. They may not fully understand it, and they instead may lean more heavily in the stereotypes of autistic people that are readily available in popular media. But I rarely meet a person who isn’t aware of autism these days.

I do see people struggle with understanding how autistic individuals operate and approach the world that was made for neurotypicals. They don’t know how to fully accept how autistics fit into their community as neighbors, co-workers, parents and citizens.

Autism Spectrum Disorder is just that – a broad spectrum of capabilities and challenges. We don’t like to use high or low functioning labels, and it makes sense some individuals can be very high functioning in some areas of their lives and lower functioning in others. I’ve started explaining the tiers (levels 1,2 and 3) of autism to help others better understand where my son and others may fall within the spectrum. That seems to be an easier and more accurate way to explain it.

Yet, we have a long way to go in having our autistic children – no matter their age – accepted in this world. Whether it’s at school, church, sports teams or even the workplace, too many of our children still face isolation, bullying and misunderstanding. As parents, we advocate for our kids, teens and young adults every day. We then must teach them how to advocate for themselves.

Stepping up your advocacy for autism

So how can we as parents, caregivers, teachers and other proponents of autistic children and adults seek more acceptance for them? I’ve been asking myself this question a lot lately. What can I do? Then if I can do it, you could do it too.

Here are some things I’ve thought of that I can do to help:

• I can help my son live his best life by continuing to get him the help he needs for struggles he has. He has a great therapist to help with his depression. J has a wonderful job coach through Vocational Rehabilitation. She is helping him find new job that is a better fit for him. I am helping him navigate starting classes again at our community college.
• Although I haven’t paid as much in attention in the past of autism-related policies, I am learning more about that. As policies, regulations and laws are brought forth in all levels of government, I can use my voice to reach out to my legislators and council members to let them know my support or opposition to what they propose.
• I can volunteer my time and talents to support local organizations that serve the autism community. I was a board member for three years for my local Autism Community Connection and felt like I was really helping families affected by autism in our area.
• As I have since J was diagnosed, I will continue to look for opportunities to educate others about autism and what life with it really looks like.
• This blog is one of the ways that I have to help support other parents with autistic children who also have ADHD. I have learned so much over the past 15 years that I want to use that to help others. I also love to research and learn new things, so I want those talents to also benefit others as I share what I learn.

How can you help drive more acceptance for autism?

Ask yourself today what can you do to help strive for more acceptance for your autistic child? If you are overwhelmed, it may be some baby steps you can take. However, if you are in a similar season of life like me where you do have some more time available, maybe there are bigger steps you can take.

Any momentem forward is good and can help progress acceptance of our children in this world.

Leave a comment below to share what Autism Acceptance Month means to you!

The post What Autism Acceptance Month means to me as a parent of an autistic child appeared first on Autism & ADHD Connection.

The Book: “Uniquely Human: A Different Way of Seeing Autism” (affiliate link)

Author: Barry M. Prizant, Ph.D., CCC-SLP

What is it about?

The cover explains so well what this book is about. It says, “Autism is not an illness. It’s a different way of being human. Autistic children and adults progress through development stages as well as we do. To help them, we don’t need to ‘fix’ them. We need to understand them and then change ourselves – our beliefs, attitudes, and actions.”

Dr. Prizant pulls from his long career working with autistic children and adults through school and health systems to help families, school administrators, teachers and others to think and approach autism differently. He shares many examples of how changing our views and strategies with working with autistic people benefits them, solves problems and helps them live better lives.

What I liked about this book

I really enjoyed the many stories of autistic children and adults that Dr. Prizant shared throughout the book. It helped as a parent to hear others’ experiences and success stories of how situations could be worked out to the benefit of the child.

It also was refreshing to see autism put into the light of how autistic people are more similar to neurotypicals than different. Many books and references talk about autism “symptoms” and different behaviors. Dr. Prizant instead presents them not as different but as behaviors that are more pronounced or intense. There is a positive side to autism that many of us forget to focus on for our children.

What I didn’t like about this book

Honestly, there wasn’t anything about this book that I didn’t like. It was well written, and the information and stories were all relevant to the topic.

Would I recommend this book?

Absolutely, I recommend the “Uniquely Human” book (affiliate link) for every parent who has a child with autism. It is well worth the read, and I learned a great deal from the book.

My rating: 4 out of 5 stars*

*(1 being the worst and 5 being the best)

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Autism Quotes

“I’ve learned that every human being, with or without disabilities, needs to strive to do their best, and by striving for happiness you will arrive at happiness. For us, you see, having autism is normal—so we can’t know for sure what your ‘normal’ is even like. But so long as we can learn to love ourselves, I’m not sure how much it matters whether we’re normal or autistic.”

– Naoki Higashida, autistic who wrote The Reason I Jump when he was 13 years old

“I see people with Asperger’s syndrome as a bright thread in the rich tapestry of life.” – Dr. Tony Attwood, psychiatrist and Asperger’s Syndrome/autism expert

“This crusade to fix herself was ending right now. She wasn’t broken. She saw and interacted with the world in a different way, but that was her. She could change her actions, change her words, change her appearance, but she couldn’t change the root of herself. At her core, she would always be autistic. People called it a disorder, but it didn’t feel like one. To her, it was simply the way she was.”

– Helen Hoang, author of The Kiss Quotient

“I don’t want my thoughts to die with me, I want to have done something. I’m not interested in power, or piles of money. I want to leave something behind. I want to make a positive contribution – know that my life has meaning.” – Dr. Temple Grandin, autistic author/speaker and animal behaviorist

“Think of it: a disability is usually defined in terms of what is missing. … But autism … is as much about what is abundant as what is missing, an over-expression of the very traits that make our species unique.” – Paul Collins, autistic and author of Not Even Wrong: Adventures in Autism

“Autism, is part of my child, it’s not everything he is. My child is so much more than a diagnosis.” – Sandra L Westendorf-Coelho, author of The World According to August – One Good Friend

“The concept of neurodiversity provides a paradigm shift in how we think about mental functioning. Instead of regarding large portions of the American public as suffering from deficit, disease, or dysfunction in their mental processing, neurodiversity suggests that we instead speak about differences in cognitive functioning.”  – Dr. Thomas Armstrong, author of Neurodiversity: Discovering the Extraordinary Gifts of Autism, ADHD, Dyslexia, and Other Brain Differences

“Our duty in autism is not to cure but to relieve suffering and to maximize each person’s potential.” – John Elder Robison, autistic adult and author of several books including Look Me in the Eye

“Everyone has a mountain to climb and autism has not been my mountain, it has been my opportunity for victory.” – Rachel Barcellona, autistic and pageant professional

“The most interesting people you’ll find are ones that don’t fit into your average cardboard box. They’ll make what they need, they’ll make their own boxes.” – Dr. Temple Grandin

ADHD Quotes

“ADHD isn’t a bad thing, and you shouldn’t feel different from those without ADHD.” – Adam Levine, lead singer of band Maroon 5 and diagnosed with ADHD as a child

“ADHD is not about knowing what to do, but about doing what one knows.” – Dr. Russell Barkley, psychiatrist and ADHD expert

“I prefer to distinguish ADD as attention abundance disorder. Everything is just so interesting, remarkably at the same time.” – Frank Coppola, movie director

“With the disorganization, procrastination, inability to focus, and all the other bad things that come with ADHD, there also comes creativity and the ability to take risks.” – David Neeleman, founder of JetBlue Airways

“I didn’t let ADHD prevent me from achieving my goals, and neither should you.” – Howie Mandel, actor

“ADHD hasn’t changed me…It is me. It’s an undeniable and simple fact of who I am.” – Tilly” –  Mazey Eddings, author of Tilly in Technicolor

“You have to take a leap of faith and believe that living an authentic life of personal power and pride is more important than the fear and pain that have been holding you back.” –  Sari Solden, author of A Radical Guide for Women with ADHD: Embrace Neurodiversity, Live Boldly, and Break Through Barriers

“Passion isn’t everything, but everything is better with passion, especially if you have ADHD. I hope that you all find that passion about something or someone. Never stop looking for it. Once you find it, fight for it with every breath.” – Shayne Neal, author of From Misery to Happiness: A Poetic Journey Through Love, Loss, and Second Chances

“Each one of us is different, but one thing that is true; Each one of us is wonderfully made, and so, my dear, are you!” – Donna Anello, author of Understanding Charlie

“ADHD is not a deficit of attention, but rather a difficulty in regulating one’s attention.” –  Dr. Ari Tuckman, psychologist

Parenting Quotes

“Trust yourself. You know more than you think you do.” – Dr. Benjamin Spock, pediatrician

“I think that the best thing we can do for our children is to allow them to do things for themselves, allow them to be strong, allow them to experience life on their own terms, allow them to take the subway… let them be better people, let them believe more in themselves.”

 –  C. JoyBell C., author

“What it’s like to be a parent: It’s one of the hardest things you’ll ever do but in exchange it teaches you the meaning of unconditional love.” – Nicholas Sparks, The Wedding

“I don’t remember who said this, but there really are places in the heart you don’t even know exist until you love a child.”-  Anne Lamott, author of Operating Instructions: A Journal of My Son’s First Year

“…the love, respect, and confidence of my children was the sweetest reward I could receive for my efforts to be the woman I would have them copy.”- Louisa May Alcott, Little Women

“I don’t think anyone can grow unless he’s loved exactly as he is now, appreciated for what he is rather than what he will be.” – Fred Rogers, American television host and author

“Who we are and how we engage with the world are much stronger predictors of how our children will do than what we know about parenting.” – Brené Brown, author of Daring Greatly: How the Courage to Be Vulnerable Transforms the Way We Live, Love, Parent, and Lead

“By loving them for more than their abilities we show our children that they are much more than the sum of their accomplishments.” – Eileen Kennedy-Moore, author of Smart Parenting for Smart Kids: Nurturing Your Child’s True Potential

“It’s not only children who grow. Parents do too. As much as we watch to see what our children do with their lives, they are watching us to see what we do with ours. I can’t tell my children to reach for the sun. All I can do is reach for it, myself.” – Joyce Maynard, novelist and journalist

“You’re going to get a lot of advice from people, and you can take bits and pieces, but you know innately what your child needs. You should trust that. Don’t beat yourself up for making decisions about things that may or may not work. It’s an experiment in life, and you’re a part of that.” – Lucy Liu, actress and director

More inspiration

Need a reminder about the positive side of autism and ADHD? Read my blog post. Other parents, teachers and autism advocates share how they focus on a more positive mindset about their child’s autism in this post. Finally, here is why I’m thankful for my son’s autism.

Do you have other quotes about autism, ADHD and/or parenting that inspire you? If so, leave them in the comments to share and encourage each other on this journey?

Additional resources

Looking for more sources of inspiration in addition to the autism, ADHD and parenting quotes above? Check out these books!

The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism (affiliate link)

Forever Boy: A Mother’s Memoir of Autism and Finding Joy (affiliate link)

I Will Die on This Hill (affiliate link)

Optimism for Autism: The Inspiring Journey of a Mother and her Autistic Son (affiliate link)

The Autistic Brain: Helping Different Kinds of Minds Succeed (affiliate link)

The post Be Inspired: 30 quotes about autism, ADHD and parenting appeared first on Autism & ADHD Connection.

The Social Story Book

When my son J was diagnosed with Asperger’s Syndrome at age 4, the school psychologist suggested that I read The New Social Story Book, Revised and Expanded 15th Anniversary Edition (affiliate link). I’m so glad she did! I had never heard of social stories before, and I kept coming back to this book over and over to find stories that would help J prepare or better manage a social situation. This is definitely one of the autism and ADHD books that I recommend parents keep on their shelves over the years to refer to when needed. You will be happy that you did.

Out-of-Sync Child

This was another one recommended to me by the psychologist who diagnosed my son J. He had ultra hearing and some other sensory issues, and I found The Out-of-Sync Child, Third Edition: Recognizing and Coping with Sensory Processing Differences (affiliate link) so helpful in better understanding sensory difficulties. The author gives some wonderful practical and applicable guidance on how to help your child.

1001 Great Ideas for Teaching and Raising Children with Autism or Asperger’s

I came across 1001 Great Ideas for Teaching and Raising Children with Autism or Asperger’s (affiliate link) in a bookstore when my son J was still young, and I’m so glad I decided to read this book. It is full of wonderful ideas and practical suggestions for parents of an autistic child. I referred back to it and used it a lot for many years to help me with J.

The Autistic Brain: Helping Different Kinds of Minds Succeed

I love reading and watching anything from Dr. Temple Grandin (who has autism herself), but the book The Autistic Brain: Helping Different Kinds of Minds Succeed (affiliate link) is especially informative as your autistic child nears the teen and young adult years. She talks about the history of autism and how autistic brains think visually and differently. Dr. Grandin also includes a lot of information about careers and employment in the book, which is helpful for parents of autistic teens and young adults.

Taking Charge of ADHD

Dr. Russell Barkley is one of the leading experts on ADHD, and I found his book Taking Charge of ADHD: The Complete, Authoritative Guide for Parents (affiliate link) especially helpful for better understanding ADHD and how to help my son J. He provides so much good advice about behavior management, partnership with your child’s school and so much more.

Uniquely Human

I am about halfway done with Uniquely Human: Updated and Expanded: A Different Way of Seeing Autism (affiliate link) and finding it so helpful. Dr. Barry Prizant shows how autism is a unique way of being human and how many “autistic” behaviors are really behaviors that neurotypicals have too but at a different intensity level. I have enjoyed reading about his own experiences in working with so many autistic children throughout his career and have been able to relate those experiences to similar ones that my son has had. I plan to do a full review of this book once I’m done reading it.

The Explosive Child

I found the learning and strategies from Dr. Ross Greene in The Explosive Child (affiliate link) incredibly practical for the challenging behavior from my son J and his younger brother. It’s a more collaborative way of working with your child to reduce those behaviors and to learn why your child is behaving that way. You can read my full book review of this book in this blog post.

The Upside of Stress

As a parent of an autistic/ADHD child, you probably have quite a bit of stress in your life. However, stress doesn’t have to be a bad thing. It’s how you respond to stress that can cause negative effects. Dr. Kelly McGonigal challenges us to look at the positive side of it in The Upside of Stress: Why Stress Is Good for You, and How to Get Good at It (affiliate link). You can read my full review of this book in this blog post.

Smart but Scattered

Our kids with autism and ADHD have a double whammy when it comes to impairment of their executive function skills. I loved Smart but Scattered: The Revolutionary “Executive Skills” Approach to Helping Kids Reach Their Potential (affiliate link) because it gave me not only a very good overview of executive function skills but so much practical advice on how to help my child. The authors even provided a quiz for me to take to better understand my own executive function skills strengths and weaknesses and educated me on those that could help or hinder my ability to help my son. You can read my full review of this book in this blog post.

The Complete Guide to Asperger’s Syndrome

When my son J was diagnosed with Asperger’s Syndrome (now part of the autism spectrum disorder diagnosis criteria), the psychologist recommended books by Dr. Tony Atwood. I thought The Complete Guide to Asperger’s Syndrome (Autism Spectrum Disorder) (affiliate link) was the best one and most helpful. It gave me such a great understanding of Asperger’s Syndrome, characteristics, behaviors and practical advice on how to help my son. I know people don’t like to use the high-functioning label, but if your child is less profound on the spectrum, this would be a good book to read.

The post 10 great books that parents of children with autism and ADHD should read appeared first on Autism & ADHD Connection.

I have been able to learn new strategies for helping my son J over the years and also found understanding through them as many are from parents of autistic children.

Here are some suggestions of podcasts about autism or ADHD to try. You can search for these on Apple Podcasts, Stitcher or other podcast platforms you use.

1. The Autism ADHD Podcast

Host Holly Blanc Moses shares strategies and different approaches to help you better support your child with autism and ADHD. She covers a variety of areas such as behavior, social skills, emotions, schoolwork and more.

2. Beautifully Complex

Parenting coach Penny Williams understands what we are going through because her son also has ADHD and autism. Penny covers a range of topics on her podcast to help parents of children with autism, ADHD and/or other neurodiversity. She notes the podcast is “decoding behavior while honoring neurodiversity, and learning to parent the individual child you have.”

3. Table for Five No Reservations

Five moms get together to bring you this weekly podcast that discusses “the real and the raw, with sarcasm, heart, and thoughtful reflection. We cover parenting, autism, relationships, mental health & so much more . . . Between us, we have 10 children ages 3 to 27, who live in 2 countries and four-time zones. We share our stories, tips, and tricks of parenting our autistic and neurotypical children.”

4. The Autism Dad Podcast

Host Rob Gorski is a dad to three boys on the autism spectrum and deals with ADHD himself. He has blogged about his life raising his three autistic boys for more than 13 years, and he began the podcast to “reach parents in a new, engaging way.”  Guests have included Dr. Temple Grandin, Kate Swensen from Finding Cooper’s Voice, and many more.

5. All Things ADHD and ADHD 365

These podcasts are from CHADD (Children and Adults with ADHD) and provide education and inspiration to parents of children with ADHD as well as adults who have ADHD.

6. The Autism Helper Podcast

Host Sasha Long discusses strategies for helping autistic students for teachers, school administrators and behavior therapists.

7. Autism Live

The Autism Live podcast is a bit different. It is “an interactive web show providing support, resources, information, facts, entertainment and inspiration to parents, teachers and practitioners working with children on the Autism Spectrum. Viewers are encouraged to participate by asking questions of experts, offering suggestions for topics to be discussed and sharing progress their children have made.”

8. Embracing Autism

Hosts Matt and Lisa McCabe are parents of two autistic children and established the charity AutismWish. They share their own experiences raising their daughters and “provide parents with guidance, tips, resources, and a newfound perspective on Autism Spectrum Disorder (ASD).”

9. Uniquely Human Podcast

Host and author Dr. Barry Prizant publishes this companion podcast for his book, “Uniquely Human” (affiliate link) to expand “the conversation on autism and neurodiversity by amplifying the voices of autistic individuals and thought leaders in providing insightful, cutting-edge and practical information about the autistic experience.”

10. Living the Sky Life – Our Autism Journey

Host Laurie Hellman describes herself as a “very tired, slightly slap happy and eternally hopeful warrior mom of a young adult son with severe, non-verbal autism.” She shares their experiences and brings a wealth of interviews with experts to share strategies and resources to help parents of autistic and other children with additional needs.

I hope you will find help, education and inspiration with these podcasts. Do you have favorite podcasts about autism and/or ADHD that are not listed here? Leave a comment so that we can share and encourage one another along this journey!

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Good qualities of autism

Autism characteristics usually include communication difficulties, social awkwardness, inflexibility and others. Yet, many autistic individuals show good qualities too in their behaviors.

1. They see the awe in everyday things that many times we miss.

We go through life many times on autopilot and miss small but significant details. I love how my son J takes a few minutes to really marvel at a sunset that I completely miss until he says something. Then I notice it. When he was younger, he would get so excited about things. My brother once told me that he wished he got excited about things half as much as J did. He truly loved that about J.

2. Those with autism bring fresh perspectives.

Because autistic individuals think differently, they bring fresh ideas and perspectives to problems and solutions. They see things that we may miss and can help us look at situations differently and see new possibilities.

3. You receive an honest answer to your question.

In most cases, if you ask someone with autism, you will receive an honest (okay, sometimes blunt) answer from them that usually isn’t sugarcoated or meant to be only what you want to hear. (One caveat to this is for our kids who have both autism and ADHD. Unfortunately, some children and teens with ADHD have a higher tendency to lie for various reasons, so I wanted to acknowledge this for parents who deal with that.)

4. Autistic individuals tend to absorb certain facts and figures.

My son J can remember almost anything with numbers and facts about weather and other events like no one else I know. Many autistic individuals are the same way. They have a tendency to absorb certain information and can talk about it depth. Many times, it is related to their special interests but not always.

5. They observe big and little things that change.

If we make a change in a room at home, even if it’s small, J sees it right away. I’ve noticed this about many of the autistic kids and adults who I interact with in various situations. They can be highly observant of situations.

6. Autistic individuals are more accepting of others’ differences.

Because they are different themselves, they are okay with others being different and accept them for who they are. Acceptance seems to come much more naturally to those who have autism.

Positive qualities of ADHD

People with ADHD can be characterized by hyperactivity, lack of focus, distractibility and impulsivity. Yet, again, there are many positive qualities of having ADHD.

Those can include:

1. People with ADHD tend to have higher levels of energy.

Many who have ADHD report having higher levels of energy and, in a study, said they enjoyed having that level of energy.

2. Those with ADHD can be very creative.

A lot of people with ADHD tend to be very creative and inventive when it comes to activities and their approach to problem solving.

3. They can hyperfocus on activities that they love.

This is a trait of both autism and ADHD. When something is their focused interest or they are really enjoying an activity, people with autism and ADHD can completely lose track of time and what’s going on around them to focus on that activity. I’ve seen my son J do this many times throughout his years when he has been doing something related to his focused interest.

4. People with ADHD tend to be more spontaneous.

Due to their impulsivity, people with ADHD tend to be more spontaneous. When you have a child or teen with both autism and ADHD, their need for routine can stifle this sometimes. Yet, I’ve seen our son J like the spontaneity of doing certain things – even if it interfered with his routine. Sometimes, spontaneity can win in the end, and that can be good at times 😊

For those with autism and ADHD, these are just some of the positive sides of those conditions. There can be many others! Leave a comment below to share others you see in your child!

The post <strong>Looking at the positive side of autism and ADHD behaviors</strong> appeared first on Autism & ADHD Connection.

The Twelve Days of Christmas (autism version)

On the First Day of Christmas, my autistic child gave to me:

A greater love than I could imagine

On the Second Day of Christmas, my autistic child gave to me:

Extra patience I never knew I had

On the Third Day of Christmas, my autistic child gave to me:

A greater acceptance of others

On the Fourth Day of Christmas, my autistic child gave to me:

The drive to obtain all the care and services my child needs

On the Fifth Day of Christmas, my autistic child gave to me:

A bigger heart for those children who struggle with making friends

On the Sixth Day of Christmas, my autistic child gave to me:

More empathy for those who are not included

On the Seventh Day of Christmas, my autistic child gave to me:

More appreciation for the kindness of others

On the Eighth Day of Christmas, my autistic child gave to me:

The desire to make the world a better place for those who are different

On the Ninth Day of Christmas, my autistic child gave to me:

Laughter even through the hard times

On the Tenth Day of Christmas, my autistic child gave to me:

A smile that lights up the room

On the Eleventh Day of Christmas, my autistic child gave to me:

A love for learning about my child’s special interest

On the Twelfth Day of Christmas, my autistic child gave to me:  

A passion to never quit trying to make their life as best as it can be

The post The Twelve Days of Christmas, my autistic child gave to me appeared first on Autism & ADHD Connection.

1.  I celebrate my son’s uniqueness from autism

If my son didn’t have autism, he wouldn’t be who he is. Having autism makes him think differently and view situations with his own unique perspective. I love that he makes me stop to look at sunsets. He notices so many details that other people miss in everyday things. His special interests always have his own take on them, and he always wants to share his interest with me and others. Is life challenging because of his autism? Sure, but each of us have our own battles that we face. His are related a lot to autism and ADHD. They also come with their rewards.

2. I love the community of parents of autistic children I’ve found

I have become part of the community of parents of autistic children in my local community, and I am so thankful for them. They truly get me, and we all need that! They understand my frustrations, and they celebrate the small victories of my son with me. I sit on the board of directors for the Autism Community Connection, and I love the difference we are making for families affected by autism in our county. I also enjoy interacting and hearing from readers of this blog! My whole purpose for starting Autism & ADHD Connection was to help other parents feel they are not alone on this journey and to provide valuable resources to help them with their autistic children.

3. Autism has helped me be more aware of the needs for those who are neurodivergent

I’ve learned so much about neurodiversity through this journey and about the needs of those with differences. My approach to people is different now than in my younger days. I’m much more tolerant of others and open to looking at things from their perspective. I think our world is a better place with the ideas, creativity and thoughts shared by so many.

4. I learn something new every day about autism

I consider myself a life-long learner, and I enjoy education and development. I can honestly say that I learn something new almost every day about autism, how our brains work and the impact of autism on families and individuals. I love that I can share what I’m learning with other parents, caregivers, teachers and advocates through my blog and participation in autism groups.

5. Autism has become part of my purpose

As I’ve been on this journey and learned more about autism, I’ve been driven to share with others my learning and do what I can to help others. Our autistic children have so much to offer this world. I want their lives to be the best they can be. For parents and caregivers, we can have tough days as we deal with school problems, behavior issues, the overwhelming paperwork, so many appointments and more. Then we see our children hit those milestones, get an A on a school project, make a friend and other successes that parents of neurotypical children almost take for granted. I want to do everything I can to help, and the desire to help those affected by autism has become part of my life’s purpose.

What are you thankful for this year related to autism? Leave a comment so that we can share and encourage one another on this journey. Happy Thanksgiving to you and your family!

The post <strong>5 reasons why I’m thankful for autism</strong> appeared first on Autism & ADHD Connection.

The statistics for autistic adults are worrisome

I admit that whenever I look at the statistics for autistic adults, I worry whether my son J will fit them. Autism is a broad spectrum of capabilities. For some autistic adults, they go to college or other post-secondary education, hold good jobs, buy their homes, marry, have children and live what society would call a more “normal” life. (Yes, I know – normal is a setting on a dryer 😊 But you know what I mean.) For others, they have a more severe form of autism and will never be able to live independently. Then there are so many who fall somewhere in between.

So what are the statistics for what life is like for autistic adults and the transition from teens to adults? Autism Speaks has done a lot of research in this area. Here are some numbers they’ve published:

• “Over the next decade, an estimated 707,000 to 1,116,000 teens (70,700 to 111,600 each year) will enter adulthood and age out of school based autism services.
• Teens with autism receive healthcare transition services half as often as those with other special healthcare needs. Young people whose autism is coupled with associated medical problems are even less likely to receive transition support.
• Many young adults with autism do not receive any healthcare for years after they stop seeing a pediatrician.
• More than half of young adults with autism remain unemployed and unenrolled in higher education in the two years after high school. This is a lower rate than that of young adults in other disability categories, including learning disabilities, intellectual disability or speech-language impairment.
• Of the nearly 18,000 people with autism who used state-funded vocational rehabilitation programs in 2014, only 60 percent left the program with a job. Of these, 80 percent worked part-time at a median weekly rate of $160, putting them well below the poverty level.
• Nearly half of 25-year-olds with autism have never held a paying job.
• Research demonstrates that job activities that encourage independence reduce autism symptoms and increase daily living skills.”

Transition from teen to adult

Right now, we are going through helping our son J transition to adulthood. He is a senior in high school, and it is a balancing act of pushing him and letting him take on more responsibility. It’s difficult because he has a lot of his own fear of becoming an adult. There is so much adulting that needs to be learned, and it can seem overwhelming for our autistic teens and us as parents. As parents, this plays into our fear of our autistic child becoming an adult.

From a school perspective, transition planning should take place during the middle school (or junior high) through high school years. It’s an important piece of the overall picture because they can help your teen think through potential careers and education paths after high school, whether that is a trade school, apprenticeship, community college, four-year university or other education.

As parents, we need to think through life skills that we need to teach our autistic teen. There are so many they must learn – money management, self-care, self-advocacy, organization skills, household maintenance, and so much more. For the most important life skills to concentrate on teaching your teen, see this blog post.

We have so many questions about what life will be like for our autistic child when they become adult, and we fear there are so few answers. We ask:

• Will my teen be able to successfully complete post-secondary education?
• Will my young autistic adult be able to find and keep a job?
• Where will my child live when they are an adult? Will I need to continue supporting them and for how long?
• How will my child manage their affairs when they are an adult?
• What will happen when I am no longer able to help my child when they are an adult?

Take action to conquer your fear of your autistic child becoming an adult

These and other questions swirl around in our minds. At least, I know they do mine. They have become louder and come more often as my son J has gotten older. Yet, I couldn’t bury my head in the sand and do nothing. I’ve had to face them to be able to overcome them. I feel better today than I did even a year ago. There are still a lot of unanswered questions, but there always will be. I can only control what I can control.

So what has helped me better manage my fear of my autistic child becoming an adult? I’m sharing what has helped me with the hope that it can help you too. Try one, a few or all of these. They also may spark some other ideas for you.

1. Be active in planning for your child’s future

As parents of autistic children, we are often overwhelmed in the moment with all of the things. Therapy appointments, schoolwork, behavior challenges, routines and more. We put off thinking about the transition our children will go through as they near adulthood. Yet, it’s not too early to start actively planning. Pay close attention to what steps your child’s school is taking with transition planning and ensure the right activities are added to their individualized education plan. You also can use my Life Vision Workbook to start thinking about and planning for your child’s future. It’s free, and you can update it each year as your child grows and learns more about their skills and interests.

2. Don’t underestimate your teen’s abilities

As daunting as the autistic adult statistics are, I don’t have to accept that those will be true for my son. Every year, he gains more maturity and skills. I have to focus on what he may be able to accomplish and plan toward that. Yes, it means I still need to be realistic about different scenarios that aren’t as good (see more below), but I am planning for a better life for him.

3. Encourage your teen to dream about their future and take steps toward making those a reality

What is your teen’s special interest? Is it something they could pursue as a future career? What can you do to encourage that pursuit? For our son J, his special interest is music. He also scores high on career tests for wanting to help others. As we talked about future careers tying those together, becoming a music therapist seems like it could be a good fit.

J was a music therapy participant himself, receiving those services for three years. He had to write a career exploration paper for his English class during his junior year of high school, so he learned a lot more about it. This year, music therapy is the focus of his senior capstone project. He had a music therapist as his mentor for the project, and he was able to job shadow for two days.

Since his grades aren’t quite good enough to go directly into the local four-year university that offers a music therapy program, he will start at a community college near us to complete the core classes needed and get his grades up. In addition, starting at this very small community college campus I think also sets him up better for a successful transition to college.

Think about what steps you can take to encourage your autistic teen to dream about their future and how you can enable next steps toward making it a reality.

4. Prepare for legal and financial needs

When your teen turns 18 years old, they are considered the legal age of an adult. That means they are technically in charge of their own health care, financial and other affairs. Yet, for most of our autistic teens, they still need a lot of help. That is why you need to take steps to at least put into place the paperwork needed to help them.

A few months before our son J turned 18, we met with a special needs lawyer who was recommended by some friends as well is listed on the Special Needs Alliance directory. He was so helpful to us to recommend the paperwork we needed in place for J, along with updates to our estate planning documents. Right after he turned 18, J signed his HIPAA release form to allow my husband and me to continue managing his health care. He also signed a power of attorney so that we can help with legal and financial matters if he cannot do so himself.

In addition, our lawyer was able to set up our family trust so that if J’s portion needs to be adapted to a special needs trust, it can easily be set up that way. If he doesn’t need a special needs trust, then his portion will act as a regular trust. We still have a lot of questions about whether J will be able to support himself independently. This option allows us to feel like he will be taken care of either way.

You also will need to think through whether supported decision-making is appropriate for your autistic teen when they become an adult or if legal guardianship and conservatorship may be needed for your young adult.

5. Concentrate on the most important life skills your teen still needs to learn to be independent

Adulting is a lot of work, and we need to be sure our teens are ready to take on those responsibilities. Yet, we don’t want to overload them all at once. Therefore, look at some of the most important things you need to teach your teen now and concentrate on those.

For my son J, here are the skills we are focused on at the moment:

• Learning to drive. He finished the online course for driving education, and we are studying and preparing him for the permit test. Once he has his learner’s permit, then I can enroll him a local behind-the-wheel driving course with an instructor. Because he is 18, he has to obtain his learner’s permit first.
• Managing his money. J has had a part -time job on weekends for almost a year now. He has checking and saving accounts. We also set him up with his own budget on our You Need a Budget account (referral link). Learning how to manage his own money takes time and practice. It also means making mistakes and learning from those.
• Improving his study habits. Unfortunately, his study habits still aren’t great, but we are making some progress. He has a great plan we created based on his ideas from research we did together. The more he can learn before he graduates from high school, the better for him as he enters community college.
• Increasing his cooking skills. Cooking is truly an essential life skill. He is great with microwaving food and preparing his own simple meals. Now we need to focus on helping him to make some basic meals using the stove, oven and crockpot.
• Doing his own laundry. We recently decided that both of our boys needed to be responsible for their own laundry. They now each have their own laundry basket in their closet, and they are accountable for washing, drying, folding and putting up their own laundry each week. They’ve had a lot of experience with putting laundry in the washer and dryer, but it’s the folding they both need more practice to master.

6. Determine what help your teen or you need during the transition

During this transition time, your autistic teen should still have access to quite a few resources through their school, Medicaid autism waiver and Vocational Rehabilitation. Take advantage of every opportunity for help with their transition.

Be sure your autistic teen starts working during high school. They may qualify for your local Vocational Rehabilitation program and obtain a job coach. Learn about our experiences in this blog post.

Seek out the help from an autism transition coach if you need and can afford it. I talked to a coach, and we decided it wasn’t the right step for J. However, she gave me some wonderful guidance for him as immediate actions. For this summer, I’ve applied for him to attend the College Internship Program in a city near us. This was a program she highly recommended. I’m hopeful that he will be accepted. While it is pricier than I anticipated, it will be worth the dollars if he can gain valuable independent skills and build some friendships during this two weeks next summer. I never would have known this program existed if I had not reached out for help.

In addition, J has joined the Young Adult Connection program offered by our local Autism Community Connection. This is a program that allows him to develop friendships with other autistic young adults in our community and learn valuable life skills. Another important factor for him is that he will continue in this program after high school. That is one thing I’m focused on this year too – activities he can begin now and continue after high school graduation.

7. Think through best to worst case scenarios

As I noted before, we cannot put our heads in the sand and ignore the realities of having an autistic young adult. All those questions we have? It’s best to think about the best to worst scenarios so that we can prepare for whichever outcome our child will have when they become an adult. I’ve spent a lot of time recently thinking about these. I’m shooting for the best outcome but know that we need to be prepared when/if things don’t go as planned. How do we pivot as things change for the better or worse? What can we do to continue to support our children as needed to help them live the best lives of which they are capable?

8. Understand the launch into adulthood will take longer for your autistic child

We have to understand that our autistic young adults will most likely not have a typical launch into adulthood – either in steps or timing. Be realistic and flexible when it comes to the path and how long it will take for your autistic young adult to fully be on their own. Or if they won’t be able to live independently, how much can they do for themselves? Help them to be as independent as they are able and make as many of their own decisions as they can.

9. Accept that your child will be their own adult and will want to make their own decisions

I think this one is tough for all parents but especially for those of us with autistic children. We’ve dedicated our lives to supporting and helping them at high levels. Sometimes, it is hard to remember that they will be their own persons with their own hopes, dreams and decisions. Remember that it is their life they need to lead – not the one you choose for them.

10. Remember to take care of yourself

You are no good to anyone else if you do not take care of yourself. You know the safety guidance on planes – put your own oxygen mask on first before helping others. If you aren’t in good mental and physical health, you cannot effectively help your child.

11. Talk to parents of autistic young adults

Do you know parents of autistic young adults? If so, then talk to them. I am lucky to know several parents who are further along this journey, so I have been able to ask them about their experiences. Their stories and learning have been so valuable to me. I also don’t feel alone in this endeavor. Ask them how they conquered their own fear of their autistic child becoming an adult.

12.  Learn to let go when the time comes

Every parent needs to learn when to let go when the time comes. It is true for those of us with our autistic children too. I know for those with children who have more severe autism, this will look different. And I acknowledge we always will champion and worry about our children no matter what age they are. That is the way of parenting, especially when we have been so involved in every aspect of our children’s lives.

In addition to facing our own fears, I know that our autistic teens are dealing with a lot of fear themselves about becoming adults. That’s going to have to be another blog post 😉 Right now, you can take steps to overcome your own fear of your autistic child becoming an adult.

Additional Resources

Do you need to dive deeper into this topic to assist your autistic teen through the transition to adulthood? If so, here are some suggested resources for you.

The ASD Independence Workbook: Transition Skills for Teens and Young Adults with Autism (affiliate link)

The Autism Transition Guide: Planning the Journey from School to Adult Life (affiliate link)

The Autism Full Employment Act: The Next Stage of Jobs for Adults with Autism, ADHD, and Other Learning and Mental Health Differences (affiliate link)

Preparing for Life: The Complete Guide for Transitioning to Adulthood for Those with Autism and Asperger’s Syndrome (affiliate link)

What have you done to address your fear of your autistic child becoming an adult? Leave a comment to share and encourage others on this journey!

The post <strong>How to conquer your fear of your autistic child becoming an adult</strong> appeared first on Autism & ADHD Connection.

ABCs for Autism and ADHD

A is for autism and ADHD

B is for the behavior therapists who help our children with life’s challenges

C is for communication and helping our children learn to express themselves and interact with others effectively

D is dealing with other people’s judgements – you are a good parent and know your child best so don’t make anyone else doubt yourself

E is for executive function skills that many of our children struggle with but can improve with help

F is for finances and learning how to make each dollar count and overcome the financial burden of autism

G is for gluten-free diets that can help some children who have gastrointestinal sensitivities

H is for help and support from others along this journey

I is for IEP (individualized education plan) to help your child obtain the school services they need

J is for jumping and other activities that help provide sensory input for our children

K is for the kind people who help us through this autism and ADHD journey

L is for love that we show our children every day and the laughter that many of our children bring to our lives

M is for music and the way it helps our children better understand emotions and even provides therapy to our kids

N is for never quitting even when as a parent you are exhausted and feel like you can’t make it through another day

O is for occupational therapists who help our children improve their gross and fine motor skills, and address sensory issues

P is for parents who love and sacrifice for their children to ensure they receive the care and services they need

Q is for questions that we constantly have about our children and autism and ADHD

R is for respite when we need a break from our caregiving duties

S is for the special education teams at our children’s schools who work hard to ensure our children are receiving the education they need and have a right to receive

T is for transition into adulthood after high school and helping our children live the best lives they are capable of leading

U is for understanding emotions to help our children learn to do so and how to regulate their own

V is for video games that our children love to play

W is for waivers through our States’ Medicaid programs for additional care and services for our children

X is for X chromosome, which may be linked to the genetic hereditary of autism

Y is for young adults with autism who need additional support from us as they age out of services and need to find their way through adulting

Z is for zero regrets in giving your love, time and resources to help your child in every way possible

Which letters stand out to you and what would your ABCs of autism and ADHD look like? Leave a comment below so that we can share and encourage each other along this journey!

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