Information for Families with Genetic Based Autism
When I think about raising children with Autism, I think Of Nancy R. She had a daughter H with Autism. One day when we were together she became furious with a stranger that said he felt sorry for H. She told the man, that his sarrow was misplaced. H had a perfect life with parents and friends that love her and parents that can give her anything that she needs. She gets to out for pizza and Mc Donalds. She loves to swim and dance. She even goes out on family outings at least twice a week. She has a extradinary life... (And I can assure you that she did really have an extrodinary life.)
Part of caring for a baby or child with autism is ordinary parenting. Plus there's the fun you can have with sensory play. It is much more enjoyable than any other kind of play with your children. Its one of the things that I am looking forward to grandmother.
INTRODUCING SENSORY PLAY
That memory goes to show how ackward people can be when they come across children with autism. And that their parents take pride in letting people see that their ability to enjoy life is fully intact. Children with autism are just like other children in the sense that they enjoy activities with their families. and they enjoy and need friends.
However... when you know that the child that you are carrying will at least have at the very least autistic tendancies, and your pregnant with raging hormones it can feel quite scary.
One out of 45 children are born with autism spectrum disorders that are not genetic. That risk is increased nine fold when parents have autism through genetic anomalies. So that still is 1 out of 4. And that is better odds than other developmental or emotional disorder.
But when we think like Nancy R. did in the story above, parenting children with autism boils down to being able offer them a loving family life with activities that they can be successful at. Providing appropriate interventions (some are featured below) is also important too.
Parents don't have to be an expert on Autism, you just need to hug them when they are hurting and frustrated, enjoy your time together and kiss them every night before they go to sleep just like you do with any other child.
Your child with special needs, has the same basic needs as all children have. You can still do alot of the same things that you would normally do and enjoy as a parent. You will have to plan outings around thier some of their challenges, but give them the same experiences as other children.
Enjoy them as they are and build their self-esteem everyday!
They are your children, love them for being unique. Celebrate even their little accomplishments and follow their interests. Give them all of the love that you have everyday. No holding back!!!
Surviving Autism: The Many Stages of Autism
Enlightenment for Caretakers and Extended Family
Surviving Autism: The Many Stages of Autism
The Adventures of Jack-Jack
The Many Stages of Autism
A friend recently asked me how things were at home with Jack-Jack, and if he is doing better. As we started talking, I mentioned the current stage we are in and how hard it is, but we have had so many stages that seem to last forever, and at just the moment I think I will beat my head against the wall, Jack-Jack has moved on to a new stage. We have had many stages of autism. Some people call them quirks, but I define a quirk as something that lasts, while a stage is your brain developing and preparing to move onto another level.
Jack-Jack crying with a complete stranger (who is now a friend)
With a typical child, you have the toddler stage, the preschool stage, the child stage, the tweens, the teens, etc. Because Jack-Jack experiences life differently, I have named our stages to reflect that. Today I am going to talk to you about the unique stages we have encountered, but they probably aren’t unique to many parents with children on the spectrum. So often we don’t talk about the realities of autism, and I feel that it is important for people to understand and accept our children.
Methods of Dealing with the Stages of Autism
Behavior modification is all the rage, but I believe that eventually, we will find out that it did more harm than good for many children on the spectrum. Have you ever tried to give up something or quit doing a certain behavior? What worked for you? Until I am ready to quit eating sugar, nothing anyone says or does will help me to stop.
With every stage, I believe that Jack-Jack’s brain needs to work through something before he can move past the stage. And so, we allow him to work this out on his own with a much gentler approach. I call that approach love and patience. And while it seems to have taken Jack-Jack more time to get through the stages, the joy and kindness he exhibits even in the worst stages is amazing.
The Quirks and Stages of Autism
Here are just a few of the stages we have gone through:
The Running Stage:
Jack-Jack would bolt. And he ran faster than most of the adults in his life. If we were at the ball field, he could often be found on the field, or across the field to another baseball diamond. Dealing with this stage meant staying away from certain places or wearing a harness to keep Jack-Jack safe.
The Stripping Down to the Underwear as Soon as we Entered the House:
Now this stage doesn’t sound bad. It is common for even many adults to change into “comfy clothes” as soon as they come home. But Jack-Jack didn’t change into comfy clothes; he stripped down to his underwear. He also did this when we entered other people’s houses.
Door Handle Licking Stage:
At age 8, we went through the licking door handle stage. It was disgusting and the more we tried to get him to stop, the more he did it. At the height of this stage, we were in Washington, D.C. and he licked every door handle that we came across. EVERY.SMITHSONIAN.BUILDING. These door handles are touched by thousands of people a day, and my son licked each one like a door handle licking expert.
The Smelling Everything Stage:
This stage is similar to the Door Licking Stage (see above), but yet it is different. We continue to be in this stage, but it isn’t as bad as it once was. At one time, Jack-Jack literally smelled everything, but now it is reduced to smelling food, toys, and a few other items. He also wanted to smell everything at places such as Disney. Everything in a souvenir shop was fair game.
The Grandma or Grandpa Stage:
Jack-Jack determined that people with gray hair were grandma or grandpa, and he would walk up to total strangers with gray hair and give them hugs. I will never forget the trip to New York City. We were eating at a cafe when he walked up to a total stranger and hugged him. Today, I just tell people that God put Jack-Jack on the earth to give hugs.
The Rewind Stage:
Our family still has a VCR. Many of our Disney films are VHS, and if you have one, you know when you rewind the tape it makes a noise. Jack-Jack was an expert on rewinding tapes, but he took the rewinding one step further. If his brain did not get the response that he needed to move forward, we would rewind. He even used a rewind noise. He would physically back-up to the point in our conversation where the wrong answer was given and we would try again.
The Kill The Dog Stage:
Jack-Jack developed fears about the age of 4-5 years old. One of the fears that developed was of dogs and cats. When we would see a dog, he would start screaming, “kill the dog.” This seems funny now, but when your child is screaming to kill an animal, people tend to look at you like you are raising a monster, and they wonder what you are doing inside your home.
The When Are We Going to Disney:
This was another stage that lasted forever. Every day, Jack-Jack would ask hundreds of times, “When are we going to Disney?” From the moment he woke up, until the moment he went to sleep, he would ask over and over. Sometimes he would ask hundreds of times a day. And each and every time, we would say, “When you turn 10,” or “In September.” We found out that by putting everything on a calendar, he could count down the days until our next Disney trip. This helped tremendously.
The Chewing on Sleeves and Neck Collars:
This stage lasted about 2-3 years. Every single shirt was ruined. Every long sleeve shirt had bite holes at the ends. We went through many, many shirts, and then one day, the stage was over.
The “I Have to Go Potty” Stage:
Jack-Jack learned that if he said he had to go to the bathroom, we took him. He began to ask to go to the bathroom anytime he wanted to escape a situation. If we were at a restaurant, and there was too much noise, he would say, “I have to go to the bathroom.” If we were at a movie, and a “bad guy” came on the screen or ominous music started, he would ask to go to the bathroom. The problem with this stage is we spent a lot of time in the bathroom, and if we choose to ignore his request, we ran the risk of him having an accident.
The Holey Sock Stage:
This has been one of our longest lasting stages, and also the one that has cost us financially. We are not quite certain how he does it, but Jack-Jack manages to get holes in his socks incredibly fast – as in he wears them two or three times. I think our family gets the award for the most purchased socks in a year.
The Many Stages of Autism – Our Current Stage is the Offense Stage
Jack-Jack is a very soft child. He gets his feelings hurt when I roll my eyes or correct him. If I yell to him when he is in another room, he will tell people that I yelled at him. He will hold onto this offense until the next person offends him. It wouldn’t seem so bad, but the whining and crying that comes with this is overwhelming.
Jack-Jack took this photo on my phone. He likes to take photos when he is upset to show us and others how we have upset him.
There have been so many more stages through the years, but we tend to forget them because he immediately is in another stage that we are trying to navigate.
Every child on the Autism spectrum is different as far as how autism effects their social interactions, language development, sensory issues, and their coordination.
Hope was the funnest and most joyful baby and toddler. My brilliant sister had her able to say "Da Da" at six months. She was very talented artistically and creativly. I could put like 3-5 things on a table and say what can we make with these things. And she would create something with me. Her dad had her building with Rokenbok at the young age of three and a half.
So the degree of how much autism affects them and the variety of skills that are more difficult for the baby or child with Autism is as different as the grains of sand on a beach. I used to tell new parents to prepare and focus on being aware of what your child may need in the next three months. It becomes overwhelming if you don't. You will learn as they grow. You don't need to be concerned about them going to school or becoming a teenager until you are there.
You don't know what what interventions that you will encounter, along the way or how tennacious your your little one will be in the therapy.
When a child with Autism becomes an adult, they will be lucky to find a partner that is also at the same level as they are. They fall in love, and want children and a family like others do at the same age. They don't always picture the journey ahead of them. They just want all the happiness and joy of having a family. H & C were on their own and doing well financially. They seemed made for each other. And actually made the decision to not use birth control. Their parents on both sides supported that decision. And they became pregnant.
The thought of having a grandchild as joyful and energetic as our daughter was, is really exciting for us. We all ready have all the knowledge about tools that were effective in creating a pretty close to normal life as an adult for our daughter. And Hope has all the experiences of using those programs as a participant, and knows the strengths and weaknesses of each program.
We used floortime and sensory art and music to help her connect with her world as a baby. Then as a toddler we used Tomatis, and started using The Listening Program, Applied Behavior Techniques, Occupational Therapy, Speech Therapy and Special Olympics and physical therapy for physical coordination. Not everything was covered by insurance, so if you can learn to do some of the therapy at home it is a big help.
Nancy tried several other programs on her journey with H. And Hope's other close friend had parents that also learned home programs or paid for other programs as well because her mom was a nurse. So we are very familiar with alot of interventions. I am a very supportive believer in the power of early intervention. I do think that was the main difference in Hope making more progress than the other two girls.
Pregnancy for those with sensory processing issues can be so individualized that it will be difficult to find a provider that is able to help. Hope says they were changing very early in her pregnacy. As well as her sugar issues. She said "It's like being three again." (I think she means before any interventions and in raw sensory overload.) Click here for more on Autism and pregnancy. Hope wants to use The Listening Program during pregnancy. They can do together and both reep the benifits. It was the easiest and most effective program for her. So it all makes sense for her to want to use The Listening Program while pregnant. As the baby's ears are functional around the 20th week, so we need to get that sorted- Hope is around 12 weeks pregnant.
You know, we can plan interventions that we will be supportive of using in utrine and after birth and feel good about that. However, that doesn't keep you from worrying about the level of love and compassion that your baby will recieve from the world around him. Every pregnant women wants to know that their child will be loved by their family and friends and given every opportunity to grow and mature with everything that they need. The fact that their child will have unique needs and behaviors, puts all that in question and the stress of that is different than other pregnancies.
H's risk of having a baby with autism is nine to twelve times greater than a pregnant mom that doesn't dip into the autism gene pool (depending on which study that you follow). However, the degree of Autism the baby will have could be different than what H and C have. So being an adult with autism, H worries about having the skills that the baby will need in a parent.
But as someone that has been through that same worry, I know that you can only give what you are able to give.
Then you get professionals to fill in the gaps. Love and compassion is what H and C have tons of. As I have told young parents with toddlers with autism, you don't have to have all the answers that your children with autism need for life. You will learn everyday as a parent and you will become his or hers first playmate and teacher. But there is no perfect parent and no parent can be everything that your child needs.
You know the saying that it takes a village to raise a child, that is especially true when that child has special needs. Hope has a natural instinct with kids that are not verbal that will become a strength as a parent. But autism affects many other areas of life. And so we will probably use the prenatal ultrasounds to help us determine if the baby may have Autism. So we can connect with professionals in the area But we will basically proceed with the understanding that her baby will at the very least will have autistic tendancies.
2. Start building our tribe that will help us identify and treat autistic tendancies as soon as we see them.
3. We can prepare our extended families with information of how to be supportive and sometimes even helpful.
The first thing we need to tell them is that; No One Factor Causes Autism.
It is unlikely that any single factor—vaccines, foods, or environmental toxins—is the cause of the steep rise in autism diagnoses. "To find clues about the cause," says Dr. Croen, "we have to do really large studies to look at different configurations of co-morbidities… see what’s unique about each separate group." New research will be addressing the questions "How do these circles overlap? What is the common thread?"
Where can autism parents find caregivers or mother's helpers?
While all situations are not the same, sometimes there is help available in overlooked places. Below are some tips on where to begin searching for help to help make life just a little easier for parents of children with autism:
Respite care service
Ask around or search online to see if there are respite care service providers or other services for children with autism spectrum disorder you can access in your area. There might also be community groups and support groups for adults and caregivers you can utilize.
You may also wish to look into hiring someone to come in once a week, or however often is suitable for your family, to relieve you of your duties for the day. If you are worried about the quality of care they will provide your child, ask for reviews and testimonials, and ask if they’re willing to study caring for those with disabilities and disorders. You can then rest assured knowing you can choose to be nearby if you want to supervise.
Also make use of the time your child might be at school, or at an activity group, as this is a great opportunity for a bit of self focus.
Extended family and friends
Do you have extended family members, parents, siblings, or a significant other who can help out with caregiving duties for your child? Perhaps an aunt, uncle, or grandparent? Families are among the best resources when it comes to autism caregiver support.
Maybe you have a friend who has offered to help in the past. Don’t hesitate to accept their offer!
You can train people in your support network on the tasks they will need to cover, and once you have a group of people who are ready to help, you can create a rotating schedule so everyone can step in to support your child at least once a month. You’d be surprised by how much this could help reduce stress.
Immediate family support
If you have a partner and/or children who live at home with you, ask them all to pitch in and work together to share the caregiving responsibilities with you.
You can assign a different person to each day of the week, or you can assign specific tasks to specific people. For example, you can ask your son to cover caregiving duties every Saturday, or you can ask him to take care of feeding duties every weeknight. This way, the parents in the home don’t have the high pressure of taking on every task 24/7.
Put up a calendar on the fridge once you have agreed on a schedule so everyone in your immediate family has a reminder of what their responsibilities are, whether they are a child helping with small duties, or an adult taking on larger tasks.
How to make the most of caregiving breaks
If you are a caregiver and have had a break to yourself recently, have you found yourself wondering, “what do I do now?” If so, you are not alone! Many caregivers spend most of their waking hours thinking about how to help their children, and they forget how to care for themselves. Below are some suggestions on things you can do and strategies you can use to look after yourself when you need a well-deserved break:
Schedule your appointments
Whether this is a medical appointment you’ve been putting off or a spa session, make sure to prioritize it! Medical appointments and treatment aren’t always fun, but they are important to make sure you are taken care of in life. As a parent of a child with autism, you should always focus on your own health, in addition to the health of your child.
Make plans with a friend
Go out and do something you like and enjoy! Find a new restaurant, go to a sporting event, or just get together for coffee and catch up with other people.
Do you have someone who is available to cover for you and look after your child for a couple of days at a time? Plan a mini trip— solo or grab some social time with a friend!
Ideas for Positive Caretaking when you are helping out
Positive parenting makes life so much easier for parents and children. Small, positive changes to your parenting style make a huge difference. Follow these easy ideas to positive parenting and enjoy the difference it makes to your entire family life.
5 Easy Positive Parenting Ideas
You can’t possibly be a perfect parent but it’s easy to be a good one! Just add one or two ideas each day so that you gradually incorporate all of these ideas into your day to day family life.
Decide what you want:
All families are different, and what works for one family may not be the best way for another. Take time to decide what your core values are as a parent and within your family. These are the things that are most important to you.
They could be good manners, good study skills, having your children help around the home or care for other members of the family/pets, teaching your child the importance of good money management or how to be independent, etc. Make sure you know what you want and what’s important to you so that you can make parenting decisions that support your core values.
Ask for what you want:
Now that you have decided what is important to you, let everybody else know and ask all family members for what you want. Give all other family members a chance to ask for what they want too. Take time to listen and talk and try to be flexible so that others’ needs are met.
For example, your teenage daughter might say that she wants more freedom to spend time with friends, and maybe as a parent, you want her home at a certain time; you can try to work out a solution that fits both of your needs. Most parents find that when they talk openly about what is important to them and show the child/teenager respect for their needs, there is a natural solution that works for both. Once the need to push against parental control is removed, things get much easier.
Praise your child:
Make it genuine and make it often. We all like to be praised, and we all feel better and achieve more with regular praise. Be specific with your praise by saying things like “Great job with cleaning your bedroom. It looks so nice and tidy now.” Or “Well done, those math questions seem quite difficult; you’ve done a fantastic job.”
Look for the good stuff:
Make sure you look for the good things your child does and says. In this busy, busy world we live in, it’s easy to notice when your child is misbehaving but completely misses the fact that he or she has beautifully behaved for the past three hours. When you focus on the behavior you like/want, you attract more of that behavior.
Give your time and be present:
Time is the most precious gift you can ever give your children. They love you, and more than anything in the world, they want you to spend time with them, and the key factor is to be there for your children. Five minutes of your time being completely present and completely focusing on your child is better than spending three hours with him but being distracted by anything and everything else. Let your children know that they are important to you.
“The best thing to spend on your child is time” ~ Louise Hart.
Parenting is hard but when you approach each day with positive parenting tactics, it can make life so much easier on everyone in the family! Open the lines of communication, spend time together and enjoy being present with your kids!
Calming, Organizing and Alerting Activities for Children
May 7, 2010
Children, in particular, those with special needs, often need many breaks throughout their school day to help them focus, stay on track, or calm in order to self-regulate. If you are in a public school environment, sitting at a desk all day can be a challenge. Today I am sharing some calming, organizing, and alerting activities for children.
These can be used in school, at home, in homeschool routines, really anywhere. There is also a free printable packet of all the ideas below for you to grab.
Organizing Activities for Kids
Heavy work (gives input to muscles and joints and causes fatigue)
Wall pushes with hands and feet.
Jumping on trampoline
Popcorn jumps (jumping from a squat position and then landing back in a squat position)
Wheelbarrow walking
Crawling through tunnels
Obstacle course
Putting up/down chairs
Sitting on “move and sit” therapy ball during classroom activities
Passing the weighted balls
Scooter board on belly and bottom (wall push-offs) 10+ reps
Resistance Bands
Alerting Activities for Kids
Now for some Alerting Activities. These are great to use with kids who are quieter and tend to be lethargic. Also great to use after sitting activities to get the juices flowing again. Just make sure you do some type of calming activity after an Alerting activity before asking your child to sit back down to learn and work again.
Bouncing on a therapy ball
Upbeat music with a strong beat
Vibrations on the arms, hand or back
Swinging
Jumping on a mini-trampoline
Going outside
Heavy work activities (moving a stack of books, re-arranging chairs, etc)
Use two fingers on both sides of the spine, give a light upward stroke 3-5 times.
Controlled spinning (no more than 10 repetitions at a time – do not do this if there is any known heart or seizure history)
Jumping Jacks
Push-Ups or Wall Push-Ups
Skipping
Running (Relay races, obstacle courses, etc)
Calming Activities for Kids
Rocking slowly over a ball on the belly
Turning off the lights
Swinging in a large circle with the child facing an adult (no spinning)
Laying under a heavy blanket
Soft music (spa CD)
Beanbag squeezes
Laying on the floor while an adult rolls a ball over top giving some deep pressure.
Use of body sock/lycra material to wrap in
Light touch/hard touch (depending on the child) – have the student brush a feather over their arms, or squeeze their arms with their hands for deep pressure.
Using two fingers on both sides of the spine to give form downward strokes 3-5 times.
Hand fidgets (such a play dough, Wikki Stix®, Thera-putty, etc.)
Heavy work (moving furniture, a stack of heavy books, pulling a weighted backpack/rolling cart)
Subscriber Printable of Organizing, Alerting, & Calming Activities for Kids
As a free gift, I’ll send you the Organizing, Alerting, and Calming printable download.
Just add your name and e-mail address and then look for a confirmation e-mail (double check your spam folder). Confirm your subscription with the link in that e-mail.
Once you register for the download will automatically be sent to your computer. Please double check your downloads folder so you can save it to your computer for future reference.
The struggle is real!
How Can Family Help?
As a member of the extended family, it is helpful to notice that we do not want your pity or sarrow. We know you mean well with your suggestions and stories about your childs developing at a different age, but just don't go there.
One thing that my sister observed was that Hope was humming or skipping when she was in a playful mood. She also helped Hope speak her first word. Another friend loved it when she crinkled her nose when she laughed. They worked for those things to laugh and giggle with our kids. We want you to verbalize something positive about our babies that you enjoyed about spending time with them.
We understand that we are parenting differently, and our kids have peculiar behaviors. We will ask for suggestions when we need another idea. I knew I would recieve kind and helpful suggestions from certain people. Like grandmas that know just how to handle what comes through the gene pool. My mom and step-dad celebrated with me on every one of Hope's accomplishments. And when she was with them they loved every minute they had with her.
So what do we want from you...a friendly warm hug, a desire to learn more about our childs challenges but most of all we want you to find things you love our kids. We want our kids to want to spend time with you and we want to see you notice positive cute things and progress in certain areas as they learn as they grow. And also that you will hug us when we need extra support.
So this section of our website is for you- our brothers, our sisters, our friends and caregivers of our precious children.
There is a level of everyday parental hardship that is difficult to understand, unless you have been in the thick of it. Sometimes it seems that only another autism parent gets you. But they are so busy with their own lives you end up no spending as much time as you would like with them.
Or maybe you’re just another mom that has a friend that is a parent of a child with autism? How do you show your support? How are you being their friend?
The good news is it’s not hard to show support to the parent of a child with autism.
The next 5 simple things written below are simple but will mean the world to an autism mom.
Here’s what you can do:
1. Be Understanding
And be patient with mom. You can do this by not getting mad when plans you made don’t work out. If she didn’t text you back it may be that her child had a meltdown and she forgot. Give that mom a little grace and understanding.
2. Help the mom out!
You can drop off some dinner. Just coming over and bring dessert or coffee and visiting will be appreciated. You can watch and learn how she responds to his/her needs as a child with Autism. Ask if you can watch her kids for an hour so she can have a little break.
Come by and visit : don’t judge the messy house and unwashed dishes. How about wash those dishes! You can do these things for each other! Bring all the kids together and let them play while you drink some tea (or coffee or wine).
Sometimes just taking a child to an appointment. is a help. Giving us time to catch up with household chores or catch a nap. I gaurantee all help that you can think of will mean a great deal to a autism or special needs mom.
3. Keep in contact
Don’t let that mom go. Don’t think that one unanswered text means she doesn’t want to talk to you ever again. It just means she has a lot on her plate. Reach out! Let her know you’re still there for her.
4. Celebrate the accomplishments
I am all about celebrating the small things and the big things and all the things our amazing children work so hard to accomplish. Celebrate with her!
5. Encourage her
This can be shown in so many ways. A simple like on her facebook page or instagram page. All of the above 1-4 is ways to show support. Speak up for special needs children, for autistic children.
These 5 ways to show support to a parent of a child with autism are amazing. It will mean so much to an autism mom.
They are also great for any parent or mom.
Let’s all support and lift up each other.
Let’s have more compassion and understanding and less judgement and grudges.
Let us show more love towards one another.
You got this, mama!
Playing with Children with Autism in your Extended Family
In one small study by Dr. Landa, babies whose parents tried at-home interventions before the children turned 1 had significantly milder autism symptoms at age 3. In addition, these methods of play are neurologically beneficial for any baby, not just those who will go on to receive an autism diagnosis, because they still help to increase a baby's language and social skills and enhance your bond.
Babies with autism are less likely to initiate play. They might be quieter or seem content by themselves. "Most young children are curious about other people and try to imitate them," says Lisa Shulman, M.D., a neurodevelopmental pediatrician and interim director of the Rose F. Kennedy Children's Evaluation and Rehabilitation Center at Montefiore Medical Center, in New York City. "But if a child has autism, they may not be as nosy or inclined to imitate." That's why, if you have a passive child, it's important for you to take the lead.
The bottom line: You can have a critical role in your baby's development by using a few strategies while you're having fun together. "We forget how much power our interactions can have," says Dr. Landa. (And if you're reading this and worrying it's too late for your older child to benefit from this kind of play, rest assured that there is still plenty you can do to assist them—your pediatrician and other specialists can work closely with you.)
No matter the diagnosis, play is always a powerful tool that can be used at any time. Plus, it's fun! Use this guide and discover ways to incorporate beneficial play strategies into your day.
Even brief playful interactions, if repeated regularly, can have a huge effect. MARLEY RIZZUTI
1. Imitate
If your baby is shaking a rattle, you shake one too. If they coo, coo back. "Imitation is one of the main ways babies learn about the social world—we figured out how to behave by watching what others do," says Geraldine Dawson, Ph.D., director of the Duke University Center for Autism and Brain Development.
"Our brains have circuits designed for imitation, but that part of the brain doesn't function normally in children with autism. When you copy your baby, it helps them see a link between what they're doing and what you're doing, which can stimulate those important neural circuits."
2. Show excitement
Let's say you're playing with a pop-up toy. Whenever a figure pops up, look your little one in the eyes and show surprise and delight. "The sharing of enjoyment helps your child understand how to make sense of what's going on in their environment," says Dr. Shulman. This is also the perfect way to encourage what experts call joint attention skills—when a child directs your attention somewhere.
While it develops in most babies around age 1, it isn't as natural a skill for babies with autism. "If your baby is playing with a block, point at it and tell them how excited you are about it," says Dr. Dawson. "This shows them you're aware of what they're playing with and that you can enjoy things together."
3. Follow the child's interest
You may have a preconceived notion of what playtime looks like (stacking cups! banging blocks!), but observe what makes your baby happy and engage them with that. "Let them show you what they're interested in," says Dr. Dawson.
If they're playing with a drink coaster or a paper towel roll, don't try to get them to read a book—get down on the floor and marvel at the coaster with them. "For a baby who might be developing autism, you want to enter their world and make it fun," says Dr. Dawson. "Letting them direct things helps you make sure they enjoy playtime."
4. Break out in song
Children who are later diagnosed with autism may not have the same language skills as other kids. Luckily, you can help head that off by changing your tune. "Songs turn routine moments into chances to communicate, and because words are attached to a melody, it's easier for your baby to engage with them—especially when there are gestures that go along with what you're singing," says Dr. Shulman. Changing a diaper? Sing "Head, Shoulders, Knees, and Toes" while touching each body part. Giving them dinner? Sing about veggies.
"One early sign that a child has autism is that they don't initiate communication, so you want to help your baby grasp that it's something they can do," says Dr. Shulman. You may not be having actual conversations, but you can still introduce the concept that first you do something, then they do it, with the back-and-forth repeating again and again.
Plenty of classic games involve taking turns, like peekaboo and rolling a ball back and forth. It can be as simple as clapping your hands, then encouraging your child to clap theirs.
6. Grab the spotlight
"A child who may have autism struggles to grasp that people are more important than objects," says Dr. Korb. To help your baby distinguish people from things, make a spectacle of yourself. "If you walk into a room and they're sitting there, talk to them and be super-interesting," says Dr. Korb. You can do a funny dance or speak emphatically.
Another way to encourage them to look at you is to put yourself front and center while you feed them or read them a book. "Position yourself so your face is directly in your baby's sight," says Dr. Dawson. For a baby who is less interested in looking at people, you want them to associate pleasurable activities, like eating, with your face. They'll realize you're part of the experience."
Discipline with Time In Instead of Time Out?
AUGUST 23, 2022
I have a threenager. If you aren’t familiar with the term, it means a three-year-old who acts like a teenager. Let me give you a few examples: “Let’s make matching bracelets for when you go to preschool and you can look at yours and think ‘Mama loves me!’” She responds with disgust, “Why??? No.” She also has the classic teenage ability to do the exact opposite of what I ask. In the quest to learn how to best teach her good behavior, I ran across the 'Time In' discipline strategy.
We all know about Time Outs and have probably spent a lot of time in them as children ourselves--a child does something naughty or throws a temper tantrum and they go to their room or the corner or a “special” chair as punishment.
For me, it was the stairs. In theory, the child is supposed to think about what they did, feel badly that they are stuck sitting by themselves, apologize, and then never do it again. For me, this was pretty effective. I would actually think about what I did and would honestly try not to do the time out worthy thing again. I would be devastated if I had to go to the stairs and would try my hardest to have a long streak of no stair sitting.
Why Not a Time Out?
Some researchers say the Time Out technique may not be as effective as we would like it to be for every child and may even have some negative effects:
When we send a child away when they are struggling with big emotions or for behaving poorly, we are telling them that we only want to be around them when they are calm, well behaved, and happy.
We are expecting a toddler to regulate their emotions on their own when the reason they are struggling is because they don’t know how to regulate them yet.
Sending our child away during heightened emotion could make the situation worse and aggravate them more.
Once they calm down they may do the bad behavior again because they were not taught the correct behavior.
Sure, would we rather not be around our child when they are kicking other kids and screaming? Totally. And we all need a break sometimes, but those instances are a perfect time to teach our child good behavior.
What is a Time In?
This teaching moment is called 'Time In.' I read many articles on this, but my personal favorite was Big Little Feelings’ words on the subject. Instead of yelling at our child to go to their room, as parents we should take the child away from the situation where they are performing their bad behavior and stay with them while they calm down.
First, start off by controlling the situation. Get down to their eye level. Make sure they are unable to hurt anyone else or themselves. Don’t lecture or teach until they are calm and can listen.
One of the things that I loved most about how Big Little Feelings explains this step is to come in confidently. Often times, as parents we are not confident on how to handle a situation. I straight up have no idea what I’m doing sometimes–flying by the seat of my pants–faking it ‘til I make it. Usually this works out just fine and we all survive by the end of the day. During times of huge tantrums or behavior issues, my confidence to know what to do usually goes down because I know how important it is to teach good behavior, and I'm not 100% sure what to do.
That is why having a plan like Time In is important. Before the situation even happens, you know what you will do and a solid plan boosts confidence. Your child will feel that and know they are safe to express their emotion instead of feeling an equal response of freaking out from you.
How to Have a Time In:
Control the situation, ensure your child isn't hurting themselves or others.
Be confident.
Get down to their eye level.
Show them love and empathy.
Validate emotions: “I know you were mad. It’s okay to be mad. I get mad too.”
Once they are calm, teach them correct behavior: “It is not okay to throw a spatula at your sister."
Give them coping strategies: "Next time you’re feeling mad take a deep breath and count to ten like Daniel Tiger.”
A Time In is a wonderful opportunity to connect with your child, show them that feelings are normal, that they are safe to express them within boundaries, and that you have them too!
Remember to Regulate Your Emotions Too
Going along with you having emotions too, make sure that you are expressing your emotions in healthy ways as well. Remember that your little one is always looking to you as an example. Maybe you aren’t throwing yourself on the ground when you don’t get candy at the grocery store, but maybe you start yelling when something small happens, like when they accidentally spill their juice or make noise while the baby is sleeping. These are totally annoying instances, but probably worth screaming.
If you are dealing with postpartum depression or feeling down for longer than two weeks, seeing a healthcare professional is a great idea! You can be a great example to your little one that taking care of your mental and emotional health is a priority and that it is not a bad or embarrassing thing.
For more information on postpartum depression, check out our posts explaining what it is and what it feels like. Remember, there are many resources out there to help you manage your own feelings, and you aren't alone!
The toddler stage is hard, and every child is different. So if you are finding that Time Out is not working for your child, try a Time In.
Parents can sometimes detect early signs of autism spectrum disorder in babies under 12 months old. Here’s what you need to know.
Watching your baby grow is an unforgettable experience. But while every child develops at their own level, failing to reach certain milestones could raise red flags. Some parents recognize signs of autism spectrum disorder when their baby is around 6-12 monthsand maybe even earlier, says Thomas Frazier, Ph.D, a clinical psychologist, autism researcher, and chief science officer of Autism Speaks. Here are the early signs of autism in babies, and why prompt diagnosis is key to managing the condition.
What To Do If You Suspect Autism
Firstly, do not blame yourself or your parenting skills. Its still researched and debated what the factors are that create autism in children. But it has nothing to do with how good or fit of a parent you are to your child.
Secondly, you will want to seek the advice of a medical professional in confirming your suspicions by booking an appointment at a development assessment center. For example, in the state of Texas, parents can book development assessment appointments online to confirm an autism diagnosis. Make a list of the various differences you notice in your child that you consider abnormal so that you dont miss anything that could help a potential diagnosis.
As previously mentioned, early intervention is key in helping your child develop coping skills for their autism as well as help your family establish an environment that will support your child. Sometimes as well depending on the severity of symptoms, intervention can possibly even reverse some habits and let them live a normal life.
Whichever the case, bringing abnormal behavior to your doctors attention is key for any suspected illness. Its better to be overly cautious and ask as many questions as possible than take a wait and see approach and potentially miss intervening early.
Lack Of Reaction To The Voice Or Presence Of A Parent
There is no turning of the head, no response to his/her name, no smile or babbling. A distinction should be drawn between a lack of reaction to a voice and lack of reaction to the presence of a parent: even if a baby does not hear, he/she will react to the presence of a parent. In any case, a hearing test should first be conducted before drawing conclusions.
Being On The Spectrum Can Mean A Wide Variety Of Experiences
Autism is described as a spectrum of disorders for a reason. Signs of autism can present differently.
Some individuals will have significant behavior and communication challenges that make the possibility of an autism spectrum disorder diagnosis more likely.
In other cases, caregivers may notice occasional atypical behaviors but that dont immediately cause them to seek a full behavioral health evaluation.
In the latter scenario, a child may never have their autism diagnosed or addressed therapeutically. Its possible that mildly-expressed forms of ASD behavior go completely unnoticed.
But another possibility is that an undiagnosed child or their caregiver will feel frustrated by a lack of explanation for certain behavioral events. They may struggle with socialization, for instance, or they may lack commitment to extracurricular activities.
Ignoring the possibility of an autism diagnosis, especially if a child seems mostly neurotypical, can make it more difficult for them to adjust and have their needs met. For this reason, teachers and caregivers who observe subtle signs of ASD should speak with a mental health professional.
A childs parents, teachers, and others with a direct role in their life are the best observers when it comes to picking up on a possible autism spectrum disorder diagnosis. Only a licensed mental health professional can come to a full, accurate diagnosis, but you dont have to be a professional to suspect that an ASD diagnosis is possible.
Experts donât fully understand all of the causes of autism spectrum disorder. It seems to be genetic, but things such as parental age and prescription medications taken during pregnancy may be involved.
For instance:
A person is more likely to be on the spectrum if a brother, sister, or parent is. But it doesnât always run in families.
A large Danish study found a link between ASD and advanced parental age of either parent.
Women prescribed opioids just before pregnancy are likelier to have a child with ASD.
Some children who are on the spectrum start showing signs as young as a few months old. Others seem to have normal development for the first few months or years of their lives and then they start showing symptoms.
But up to half of parents of children with ASD noticed issues by the time their child reached 12 months, and between 80% and 90% noticed problems by 2 years. Children with ASD will have symptoms throughout their lives, but itâs possible for them to get better as they get older.
The autism spectrum is very wide. Some people might have very noticeable issues, others might not. The common thread is differences in social skills, communication, and behavior compared with people who arenât on the spectrum.
Signs Of Autism In Girls
The ratio of boys to girls diagnosed with autism spectrum disorder is 4:1. However, there is some evidence that autism is going undiagnosed in girls, particularly those who are at the higher functioning end of the spectrum.
There is discussion around whether girls and women with autism may display different symptoms to boys and men, and that the current diagnostic criteria may be biased towards boys and stereotypical male behavior. Girls and women may also be better able to mask difficulties with social interactions than boys, and this may delay a diagnosis. New diagnostic criteria may be needed to assess ASD in girls and women. Past theories, including controversies such as the extreme male brain, may have led to under-referral and under-diagnosis of autism spectrum disorder in girls and women.
Signs that a girl may have autism include:
Difficulties with social interactions however, differences from typical autism symptoms may include:
Better grasp of emotions and ability to make friends than boys
May mask lack of intuitive understanding of social situations by repeating role-plays seen in real life or film/television
May be able to make friends but find difficulty keeping them
Intense focus on particular topics differences in gender may be expressed as a focus on trains or dinosaurs for boys, and celebrities or animals for girls,
Fewer repetitive behaviors and gestures than boys, or may have different gestures than boys
Early intervention is very important in children with autism spectrum disorder. Services such as speech therapy and behavioral and skills training are more effective if begun when a child is young.
For this reason, it is helpful to receive a diagnosis as early as possible. However, many children remain undiagnosed until they are in school. Some people are not diagnosed until they are adults.
If you suspect someone has autism, including yourself, contact a medical professional as soon as possible.
Should I Get My Child Assessed
Early Signs Of Autism In Babies And Toddlers | 5 Common Signs
You should get your child assessed for ASD if:
you have concerns
you notice any signs or symptoms
your child has a close relative with ASD
Normally, your health care provider will test your child first. You can help your health care provider understand the unusual behaviour you see by:
taking photographs
maintaining logs or diaries
capturing these behaviours on video
If there are concerns, then your health care provider should refer you to a specialist for more tests. A specialist is the best person to help diagnose your child.
Babies usually learn to gesture before they learn to talk. In fact, gesturing is one of the earliest forms of communication. Autistic children generally point and gesture much less than children with nonautistic development. Less pointing can sometimes indicate the possibility of a language delay.
Another indicator of a developmental difference is when an infants gaze doesnt follow you when youre pointing at something. This skill is sometimes called joint attention. Joint attention is often decreased in autistic children.
Signs Of Autism In Infants
Its important to note that every baby is unique and their symptoms or development may be different than whats listed here below. Its always best to consult your pediatrician or find a pediatric specialist in development to discuss any abnormal or odd habits that your baby is showing that could be signs of autism in infants.
Babies learn to use gestures and sounds from 9-16 months to let you know what they want or dont want, and what theyre interested in.
It should be easy for your baby to use a gesture and sound while theyre looking at you.
If its hard for your baby to look at you and use a gesture and sound, all at the same time, this can be an early sign of autism.
Development Of Infants With Early Signs Of Autism
While your baby is growing up, you may wonder if they are developing as they should. There are certain developmental milestones children hit as they grow up.
It is important to keep an eye out for these so that you can see if your child is behind on their development.
smile at people
try to look at their parents
coo
turn their head towards sound
If you notice that your baby is not engaging in such activities, you may want to get your child tested for ASD.
Children with ASD also act in ways that seem unusual or have interests that arenât typical, including:
Repetitive behaviors like hand-flapping, rocking, jumping, or twirling
Constant moving and âhyperâ behavior
Fixations on certain activities or objects
Specific routines or rituals
Extreme sensitivity to touch, light, and sound
Not taking part in âmake-believeâ play or imitating othersâ behaviors
Fussy eating habits
Can A Child Outgrow A Sensory Processing Issue
While kids with sensory processing issues may need therapy into adulthood , they can learn to better cope with the sounds, smells and other sensations that they encounter as they grow.
In the meantime, you can form a team with your childs occupational therapist and pediatrician to note any improvements in behavior once therapies have begun.
When theyre struggling with something, they may not call out for assistance as other toddlers tend to do.
Toddlers with autism may not play with others or show interest or enjoyment in what theyre doing. If you notice your toddler consistently doesnt seek out social interactions with you or other children, it may be worth discussing with your doctor.
Toddler Toe Walking: What You Need To Know
Researchers study signs of autism in babies
Parents wait expectantly for the day their child toddles uneasily across the floor for the first time. Unfortunately the triumph and pride can turn to concern and worry when a toddler is moving in atypical ways like toe-walking. But a toddler walking on toes is not necessarily in-itself a reason for parents to be on red alert. There are a number of potential reasons for tip toe walking and only rarely do they relate to larger concerns like autism or cerebral palsy.
Heres what parents of toe walking toddlers need to know.
Many children dont get diagnosed until theyre older, even though experienced professionals are able to make reliable diagnoses by age 2. The average age of diagnosis is 4 years old, with some variance based on the type of disorder.
Pervasive developmental disorder-not otherwise specified : 4 years, 1 month
Asperger disorder: 6 years, 2 months
Its important to pay close attention to a childs behavior early on to see if theyre displaying the signs of autism, as early intervention is beneficial. And research also shows that parents generally notice developmental differences in their child even before he or she is a year old. If your parental instinct tells you something may be delayed in your child, its a very good idea to trust that and seek an expert opinion.
Theres no one medical test that can determine if a child has an autism spectrum disorder, but there are a number of behaviors and developmental delays that could indicate your child has autism.
Early Signs Of Autism In A 2 Year Old
If you feel like your 2-year-old doesnt seem to be catching up with their development milestones, you may start looking for certain signs of autism spectrum disorder for any delays.Mild symptoms can be mistaken for being shy or the terrible twos.
Here are some red flags that may indicate ASD:
Doesnt speak more than 15 words,
Cant walk ,
Doesnt know functions of household items like fork,
Autism spectrum disorder is a developmental disorder, which means that signs become apparent as a child does not develop as expected, for example developing speech or learning to crawl later than expected.
As such, there are few signs of autism that are noticeable in newborns. However, if a baby fails to reach the developmental milestones expected at two months old, four months old, six months old, nine months old and a year old, this could be one of the first signs of autism or another developmental condition.
Good to know: Not all babies reach developmental milestones at the exact same time. It is normal to have some variation in development. If in doubt about a childââ¬â¢s development, check with a doctor.
Some of the early signs that a baby under one year old may have autism spectrum disorder include:
Not babbling by four months old
Not smiling by five months old
Not laughing by six months old
No interest in games like pat-a-cake or peek-a-boo by eight months old
Not responding to their name by 12 months old
Not looking at objects pointed out by other people by 12 months old
Being upset by loud noises
Not looking to a parent for comfort in new situations
Being happy to play alone for long periods of time
Not making eye contact
Signs of autism in toddlers
Some of the signs that a toddler, between one year old and two years old, may have autism spectrum disorder include:
The Importance Of Early Diagnosis
The American Academy of Pediatrics joins with the CDC in recommending screening at a young age to ensure early intervention and better developmental outcomes. In the U.S., the majority of autism costs are for adult rather than child services . With early diagnosis and treatment, the cost of care over a lifetime can be reduced by two-thirds.
As Mother’s Day approaches, this is the time when we celebrate mothers and our families celebrate us.
But there’s a group of moms many people aren’t aware of. Autism moms.
With 1 in 45 children diagnosed with autism now (from a CDC survey in 2015, it may be even higher now), there’s a very good chance you know someone who is an autism mom. Maybe it’s an acquaintance or a coworker. It could even be a family member who’s child is not diagnosed.
You may not even realize it. Most children with autism look just like other children.
Autism moms are good at hiding their world. She might not want to tell everyone her child has a “label” or maybe she’s too exhausted to explain once again.
People associate autism with “rain man” with extreme symptoms. That’s true.
Autism is often invisible to the outside world. People see odd or sometimes “inappropriate” behavior – maybe a tantrum in the grocery store from a child who’s far “too old” – and are quick to label as “bratty” or “poor parenting.”
Believe me, that mom is painfully aware of how her child is acting. She’s probably exhausted, desperate for some hope, and just wishing someone – anyone – would tell her everything will be okay. She would be so grateful for a kind hand to help her instead of stares and judgmental looks.
And if an autism mom does share that her child has autism, she is often faced with well-meaning, but painful comments.
Comments like: “Are you sure it’s autism? He doesn’t act like it” or “He doesn’t look autistic.” “She just needs more discipline and a good spanking.” “She’s just spoiled.” “He’ll outgrow it. Don’t worry.” “I’m sorry.”
Yes, she is sure her child has autism.
It’s not easy to get an autism diagnosis; it often requires months on a waiting list, hours of testing and questioning, and multiple specialists.
Some people seem to think moms are carelessly throwing around a “label” as an excuse for their child’s behavior.
This is simply not true. An autism diagnosis is often the result of months or even years of that mom struggling to help her child and finally coming to the conclusion that something is different, even “wrong” with her child. It’s very difficult for a mother.
More discipline or “spoiled?”
Kids with autism are different. Not in everything, but in some ways they are. Many don’t respond to the usual parenting that “typical” kids do. That’s why they’re diagnosed with autism by experts.
He’ll outgrow it.
Autism is not something you can outgrow. It’s not a “phase” that will pass with time. It’s a medical diagnosis.
It doesn’t mean there is no future, but it does mean that life will be more challenging. Some kids with autism will never be capable of living on their own. Others will, but may require more support and accountability.
Beyond that, do you think any autism mom would not want her child to “outgrow” autism? Every mother wants her child to grow up and be a happy, independent adult who can function as a responsible member of society.But for autism moms, that’s not always the reality of their future.
An Autism Mom’s Reality:
All mothers have hopes and dreams for their children. We think about our kids’ futures and imagine them as happy, independent adults, maybe married with children of their own.
All moms worry about their children. But for autism moms that worry takes on a whole new level because they know the odds are stacked against their child already.
For an autism mom, tiny things that “typical” moms wouldn’t even blink an eye at are cause for huge celebration.
Here are a few examples of things autism moms celebrate:
watching her child make a new friend
hitting a baseball at practice
seeing her child eat pizza (he hasn’t for years because of sensory issues)
making it through a game without a meltdown
“behaving” all day at school and remembering to bring his lunchbox and homework home
getting to school on time
eating
showing empathy
making it through an entire meal at a restaurant without needing a “break” at the car
expressing feelings of hurt or frustration instead of a meltdown
allowing a hug or someone holding his hand
following simple instructions
earning “citizen of the month” at school
Real-life Sacrifices Autism Moms Make:
I gave up working full-time. I opened my own business and a lot of that money goes to pay for ABA therapy. – CC
I’m a single mother and I’ve given up finding a partner. – CS
The biggest sacrifice has been my marriage. My spouse has not accepted our son’s disability and refuses to see past our sons “superpower”( that’s what I call it). – EC
I have degrees, I love to work, but raising my kids is a 24-hour job. I don’t get days off, I don’t get breaks, I don’t get vacation time…My rewards are far greater than any sacrifice I’ve ever made though. – CS
YES, I WANT THIS!
I’ve given up most friends because they don’t understand and can’t relate to what we are going through. It’s a lonely road.
Here are a few things that Autism Moms would like you to know:
I wish I could tell people I need help… JL
Don’t be sorry for my son’s diagnosis, help me celebrate him. – JL
Support us, ask questions, don’t feel sorry for us…EB
Children on the spectrum are gifted! – EB
I’m actually just trying to survive and be a good mom! I wish they only knew just how hard that is sometimes! – JC
I am stressed a lot. No one really understands how challenging it can be. – JG
Many autism kids don’t like hugs and kisses, but it doesn’t mean we don’t show them affection. – RR
Some days are winners, some days are fighters, and others are days of reflection of just how hard motherhood can be.
I wish you would just give my son a chance. If you take some time to get to know him and listen to him, you’ll get a glimpse of just how amazing he is. – EB
I wish people wouldn’t be so quick to judge. – EB
Please don’t talk about my child in front of him. Just because he doesn’t act like he’s listening doesn’t mean he isn’t. – MD
Life as an autism mom is challenging, but there are many amazing rewards too. Our kids are incredible and we love them so much. Just give them a chance…
Autism moms are incredible women who willingly make huge sacrifices because their children are worth it.
The next time you see a parent struggling, don’t turn away and ignore her or worse, stare and judge; instead, offer support. A smile, a helping hand, a simple “you’re doing a good job” will make more of a difference than you could ever know.
_________________________
35 Things Special Needs Parents Want Their Family and Friends to Know
One thing we hear often from parents in the Mighty community is that their families are just that — families, like anyone else’s. But there are certain parts of their experiences that can look different and may not be fully understood, even by the people closest to them. Furthermore, many of us may not know exactly what these parents need from us, their supporters.
We asked the parents of children with special needs in our community to share what they wanted their friends and families to know about their lives. Hopefully this spreads empathy and understanding. Here are some of their responses.
1. “Even when it looks like we have it all under control, we could still use help, even if it just means a hug of support when overwhelmed.”
2. “It’s not always easy to go out. I wish people would visit more if they want to see us, instead of insisting I bring my son into a loud, difficult environment that he can’t cope with.”
3. “We might not be someone else’s version of ‘happy,’ but we are our own version of happy. We have figured out what works for us, and we only operate one day at a time.”
4. “Keep reaching out to me. Keep calling and visiting. It’s hard for me to reach out and call friends and family. Every day is so full. Don’t forget that I still need you.”
5. “Although we’re coping on the surface, underneath I am terrified of the responsibility.”
6. “We don’t do spontaneous.”
7. “Don’t feel sorry for us.”
8. “Define ‘normal.’ What’s normal in my house is not what’s normal in your house or any other house, special needs or not. Normal is relative to who is defining it. Please be sensitive to this. Everyone has a journey and they all take different roads, and they are all beautiful, each in its own way. I love my normal.”
9. “The way we do things is because we’ve tried everything else. Please do not judge our decisions.”
10. “The worrying never stops, even when he is doing well.”
11. “No, it’s not all rainbows and unicorns. However, I wouldn’t change it for the whole world.”
12. “The hardest thing to do is keep focus on the miracles and progress when deep down there is so much fear. Will he have friends who accept him? Who will take over his daily care if something happens to me? How can we pay for more therapies? How will we deal with ignorant people’s hurtful comments? The fear is endless and haunting. And I want to enjoy his beauty, curiosity and humor, too. The fear and joy are constantly competing for my heart and head space. I don’t need my friends to ‘fix’ anything, just to listen and care about us.”
13. “My children are a blessing, not a burden!”
14. “Stop judging my child for what he says or does. He can’t help it, whether you believe it or not.”
15. “Ask! Ask us how we are coping. Ask how he is doing. Ask about his disorder. Ask how you can help. Ask how the other children are coping. Just ask!”
16. “Everyone’s always looking for an answer a way to ‘fix’ him. He’s not broken. There is no answer. He writes his own book. Be thankful you get to partake in his story and enjoy every minute along the way.”
17. “We don’t want your pity. We want your willingness to understand and accept.”
18. “Please educate your own children about bullying, and encourage them to be a friend to someone who may be different.”
19. “I am his safe place. Listen when I say we can’t go or have to leave.”
20. “Everything is an accomplishment. We don’t sweat the small things. We take joy and pride in every day together. Every moment together is as precious as life itself.”
21. “Life is chaotic, loud, very, very messy, and exhausting, but we wouldn’t change it. Our kiddos are still our kiddos. We don’t need quick-fix advice. We need lots of coffee and some laughs thrown in.”
22. “Don’t be quick to judge who and what you see. You never know what the true story is, and you can’t know what your reaction might have been if you were in my shoes.”
23. “Our children are more like other kids than they aren’t. Treat them no differently than other children you love. Be patient, give hugs, and include them in all that we do. They are our future.”
24. “We are harder on ourselves than anyone else ever could be, so be kind with advice! Just because it doesn’t seem like part of your plan for us, doesn’t mean we don’t think there is potential for it to work!”
25. “I may look like a super mom, but really I am just a mom. I really just want to give credit due where it should be. That’s my son, who gives me the inspiration to keep moving forward and never give up. I’m not saying it’s easy or that it isn’t full of emotions and worrying. It’s a roller coaster ride, but it has the most beautiful scenery!”
26. “It can be lonely. Please, please teach your children to respect and love, not fear or hate people who are different. Nothing hurts more than watching my child be left out or ignored or left behind.”
27. “Yes, my schedule is full of doctors’ appointments, and physical therapy, surgeries and more. But I can make time to see you, if only you would ask or invite us over. It is hard to ask for help. We are so used to doing it on our own, but we need help sometimes, even if it’s just an ear to vent to.”
28. “Experience our home and our life. See how amazing our kids are in their comfort zones, rather than an unfamiliar environment that may incite unpleasant behaviors from overstimulation. You will hopefully leave with a better understanding.”
29. “We are not bad or lazy parents. We have learned with the help of our son what works best for all of us and are very grateful for that!”
30. “I don’t have super powers and I am not a saint. People say, ‘I couldn’t do what you do,’ but I’m sure you could. We all just do what we have to do. We take care of our families and life, just like everyone else.”
31. “Don’t feel sorry for us or embarrassed by our children. We love them for who they are and are just as proud! Reach out to comfort us, but understand we wouldn’t change our children for anything else in the world!”
32. “We might be late, we might not get there at all. But please know we tried our best. ‘Simple’ things sometimes are not that simple.”
33. “It may seem like we have our sh*t together, but we don’t. We learn about new challenges daily. We still hurt daily from unacceptance. We feel isolated on a daily basis. There is so much more going on behind the scenes you know nothing about.”
34. “You may be the only person we can tell our ‘real’ truth or feelings to. Don’t try to fix it or feel bad for us. Just support us and love us.”
35. “Even if we look different, we are a happy family, exactly like you.”
What’s it like to have autism? I have often found myself wondering this when out and about with my children, watching them interact with the world.
I am a parent of someone diagnosed with autism spectrum disorder and have found myself watching videos by autistic people, and reading some books written by autistic people to try and understand what it’s like to have autism. The overwhelming response seems to be that autistic people feel that the world isn’t made for them and only neurotypical people can really understand how it works.
There are specifics that are different for each individual, as no two people with autism are going to experience the world the same way. This article is going to spotlight a few autistic people and how autism feels to them and what we, as parents, can do to help the world feel like a more accepting place.
That was hard to hear as I watched each of the individuals explain their experiences as they went through life before they were diagnosed, being diagnosed, and after diagnosis. It would seem that most people don’t really understand how to interact with individuals that are neurodivergent and that the stigma that surrounds autism spectrum disorder doesn’t help with those interactions.
I have taken quotes from individuals on YouTube and a book that I have read that I felt did a good job giving a well rounded explanation of their experiences living with autism and how they feel. The following article will be predominantly based around those individual experiences and a tool to try and understand how autistic people may feel and their life experiences.
This isn’t a complete analysis on how every person diagnosed with autism spectrum disorder feels and their experiences. Every individual is different, this article is just a tipping point and conversation starter to help open the door to how someone else’s life experiences differ and what could possibly be started to help those in the future.
This is the million dollar question and one that parents, teachers, and those that interact and have an autistic person in their life wonders. I have summarized what a couple of people have stated being autistic is like for them.
When asked what’s it like to be autistic? Dan from The Aspie World answered:
“It’s like being all by yourself, in a crowded room constantly. When you could be in bed relaxing. And then, all of a sudden at no fault of your own, at the drop of a hat, you’d be flipped upside down into a bath of cold water.”
He added, “Then thrown into the middle of the street with people looking at you while reciting the national anthem backwards. That’s how confusing life is for people on the autism spectrum.”
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No two stories are the same
Ethan Lisi discussed what it’s like to have autism spectrum disorder on the Ted channel. He had so many important points and they were all very eye opening.
In one of his examples, he compares two game consoles, a Playstation and Xbox. He states:
“They are both highly capable consoles with different programming. But if you put your XBOX game in your Playstation, it won’t work because the Playstation communicates differently.”
This is how he felt that the neurotypical brain versus the autistic brain compare. He continues by stating:
“The main problem with living autistic in today’s society is that the world just isn’t built for us.”
As a mother to a child with autism, that brought tears to my eyes and a tug at my heart. I wondered if this was how my child felt, because I know there are challenges. They can either be made easier or more difficult depending on whether people are unwilling to forget about in-box thinking and realize that there really is no box necessary to make a world that is accepting and comfortable for people with autism.
What does stimming and empathy have to do with it?
Ethan Lisi continues his talk and includes stimming and explains that it is the autistic person’s way of zoning out:
“It can often feel necessary for us to stim. However, it’s often frowned upon, and we’re forced to hide it. When we’re forced to hide our autistic traits like this, it’s called masking. And some people mask better than others.”
He talks about masking and adds, “Some people think that because of our ability to mask, that this is the cure to autism. However, all it really does is make us ashamed of showing our true selves.”
When discussing empathy and the stereotype that autistic people don’t have empathy he explains that he has a lot of empathy, he just doesn’t know how to react. He says:
“Emotional expression, however much or however little, is difficult for me. And that is because I am bursting inside with every single emotion one feels at all times. Though, of course, I cannot express it that way.” He continues, ” My inner feelings are unlimited, but my mind only lets me express extremes or nothing.”
What it’s like living with autism
In the video, 5 Things about Living with Autism, a young man named Andrew discusses his diagnosis and talks about how his brain is wired differently. The five examples include:
Social skills and understanding Andrew discusses how it is difficult for him to understand different things. He states that he doesn’t ‘get’ metaphors and takes them very literally making some social situations difficult and awkward.
Having a complicated social life He discussed how difficult it can be to find other people with autism spectrum disorder and how he lost touch with friends and people he got along with.
Breaks in routines and environmental changes He talks about how changes in his routine or even the way things look, feel, or other sensory stimulant can be difficult for him.
Loud noises He has sensory issues with loud noises that make him feel overwhelmed and can be very distracting, like his example of a fly in the room.
Emotional skills Andrew discusses that he has to think and concentrate on what he is going to say or how he is going to react to other people’s emotions. He says he can come off as quiet, but that his emotions can also be heightened when something bothers him, an example would be breaking the rules.
Different ways parents react
Tyler McNamer wrote a book called Population One. It talks about daily life as a person on the autism spectrum disorder. Some of the subjects he talks about is bullying, things that make a person with autism feel unaccepted, and how his parents make him feel.
In his chapter labeled My Mom, he talks about how his mom makes him feel accepted. He says:
“When I’m at Mom’s house, I get to be myself when I’m indoors. It’s like no one is there, and no one minds when I’m a little odd. But that’s what’s cool about being at Mom’s house – I get to release the oddness and get it over with. I don’t do it anywhere else because then people would think I’m weird.” He finishes the chapter saying, ” With Mom, everything is calm and not complicated. With Dad, it’s a different story.”
He talks about how his dad views Tyler’s life differently because of the way he views his world. There are more comments about his parents like:
“Both my parents are sometimes the same, sometimes different. They are like the Yin and Yang of my life.”
What parents can do
Parents can make all the difference. A lot of times parents are the cushion that autistic children have, their safe place.
Although there can be aspects that can seem a little overwhelming and difficult to understand. Certain things like sensory sensitivity, social anxiety, a fascination with special interests are very important, but making your child feel accepted for who they are seems to be the overall response people with autism want from parents, caregivers, and others they love.
Non autistic people have a hard time understanding a world where they don’t fit, that makes you feel that you don’t belong. Those individuals that aren’t neurotypical, like those with Attention Deficit Disorder (ADD), Attention Deficit Hyperactivity Disorder (ADHD), and other learning or social skills disorders that have been bullied and felt different will have an easier time understanding autistic people.
Although I am a non autistic person, my child has told me they feel that I am one of the people who understands them the best because I don’t see things the way everyone else does. When they said that I cannot explain how great that felt because I knew they felt accepted somewhere, but I wanted them to feel that in more places and from other people as well.
Taking a moment and looking around at the world, getting to your child’s level and playing with the toys that they always want to play with, watching the videos that they always want to talk about, learning as much as you can about Steve from Minecraft and playing Minecraft with your child so that you can grasp what they are talking about and can actively have a back and forth conversation that helps them feel accepted while working on social skills is always a win.
See the world as they see it
There is a video that the National Autistic Society put out called Autism TMI Virtual Reality Experience. It shows how something that can be a part of everyday life, a trip to the mall, can look to someone on the autism spectrum.
The first thing that you notice is that the child is experiencing some sensory processing difficulties as things start happening around them. Things like the sound of balloons, bright lights, things that affect all five senses and the child starts having a meltdown.
The mother in the video removes the child from the overwhelming environment, makes eye contact, talks to them in a calming way, letting them know that they are safe and helping them to take long and calming breaths, bringing the child out of being overwhelmed.
This is an eye opening video that puts people in the autistic child’s shoes and shows things from their perspective. It also demonstrated how the mother in the video uses both verbal and nonverbal communication to communicate with the child by using a calming voice while slowly using her hands to show the calm down sign.
Final thoughts
In the end most people want to be and feel accepted and our children on the autism spectrum are no different. Making sure to take the time and really get to know them and know what helps them interact in the world that is just starting to open up and really learn about autism and what it means to be autistic.
Always strive to be the calm piece in your child’s world, there are so many resources that can help parents learn ways to cope with the array of emotions that go along with being a parent of someone with autism and offer ways of learning to better understand your child’s world.
Dave Willis once said:
“There are no perfect parents, and there are no perfect children, but there are plenty of perfect moments along the way.”
A friend recently asked me how things were at home with Jack-Jack, and if he is doing better. As we started talking, I mentioned the current stage we are in and how hard it is, but we have had so many stages that seem to last forever, and at just the moment I think I will beat my head against the wall, Jack-Jack has moved on to a new stage. We have had many stages of autism. Some people call them quirks, but I define a quirk as something that lasts, while a stage is your brain developing and preparing to move onto another level.
Jack-Jack crying with a complete stranger (who is now a friend)
With a typical child, you have the toddler stage, the preschool stage, the child stage, the tweens, the teens, etc. Because Jack-Jack experiences life differently, I have named our stages to reflect that. Today I am going to talk to you about the unique stages we have encountered, but they probably aren’t unique to many parents with children on the spectrum. So often we don’t talk about the realities of autism, and I feel that it is important for people to understand and accept our children.
Methods of Dealing with the Stages of Autism
Behavior modification is all the rage, but I believe that eventually, we will find out that it did more harm than good for many children on the spectrum. Have you ever tried to give up something or quit doing a certain behavior? What worked for you? Until I am ready to quit eating sugar, nothing anyone says or does will help me to stop.
With every stage, I believe that Jack-Jack’s brain needs to work through something before he can move past the stage. And so, we allow him to work this out on his own with a much gentler approach. I call that approach love and patience. And while it seems to have taken Jack-Jack more time to get through the stages, the joy and kindness he exhibits even in the worst stages is amazing.
The Quirks and Stages of Autism
Here are just a few of the stages we have gone through:
The Running Stage:
Jack-Jack would bolt. And he ran faster than most of the adults in his life. If we were at the ball field, he could often be found on the field, or across the field to another baseball diamond. Dealing with this stage meant staying away from certain places or wearing a harness to keep Jack-Jack safe.
The Stripping Down to the Underwear as Soon as we Entered the House:
Now this stage doesn’t sound bad. It is common for even many adults to change into “comfy clothes” as soon as they come home. But Jack-Jack didn’t change into comfy clothes; he stripped down to his underwear. He also did this when we entered other people’s houses.
Door Handle Licking Stage:
At age 8, we went through the licking door handle stage. It was disgusting and the more we tried to get him to stop, the more he did it. At the height of this stage, we were in Washington, D.C. and he licked every door handle that we came across. EVERY.SMITHSONIAN.BUILDING. These door handles are touched by thousands of people a day, and my son licked each one like a door handle licking expert.
The Smelling Everything Stage:
This stage is similar to the Door Licking Stage (see above), but yet it is different. We continue to be in this stage, but it isn’t as bad as it once was. At one time, Jack-Jack literally smelled everything, but now it is reduced to smelling food, toys, and a few other items. He also wanted to smell everything at places such as Disney. Everything in a souvenir shop was fair game.
The Grandma or Grandpa Stage:
Jack-Jack determined that people with gray hair were grandma or grandpa, and he would walk up to total strangers with gray hair and give them hugs. I will never forget the trip to New York City. We were eating at a cafe when he walked up to a total stranger and hugged him. Today, I just tell people that God put Jack-Jack on the earth to give hugs.
The Rewind Stage:
Our family still has a VCR. Many of our Disney films are VHS, and if you have one, you know when you rewind the tape it makes a noise. Jack-Jack was an expert on rewinding tapes, but he took the rewinding one step further. If his brain did not get the response that he needed to move forward, we would rewind. He even used a rewind noise. He would physically back-up to the point in our conversation where the wrong answer was given and we would try again.
The Kill The Dog Stage:
Jack-Jack developed fears about the age of 4-5 years old. One of the fears that developed was of dogs and cats. When we would see a dog, he would start screaming, “kill the dog.” This seems funny now, but when your child is screaming to kill an animal, people tend to look at you like you are raising a monster, and they wonder what you are doing inside your home.
The When Are We Going to Disney:
This was another stage that lasted forever. Every day, Jack-Jack would ask hundreds of times, “When are we going to Disney?” From the moment he woke up, until the moment he went to sleep, he would ask over and over. Sometimes he would ask hundreds of times a day. And each and every time, we would say, “When you turn 10,” or “In September.” We found out that by putting everything on a calendar, he could count down the days until our next Disney trip. This helped tremendously.
The Chewing on Sleeves and Neck Collars:
This stage lasted about 2-3 years. Every single shirt was ruined. Every long sleeve shirt had bite holes at the ends. We went through many, many shirts, and then one day, the stage was over.
The “I Have to Go Potty” Stage:
Jack-Jack learned that if he said he had to go to the bathroom, we took him. He began to ask to go to the bathroom anytime he wanted to escape a situation. If we were at a restaurant, and there was too much noise, he would say, “I have to go to the bathroom.” If we were at a movie, and a “bad guy” came on the screen or ominous music started, he would ask to go to the bathroom. The problem with this stage is we spent a lot of time in the bathroom, and if we choose to ignore his request, we ran the risk of him having an accident.
The Holey Sock Stage:
This has been one of our longest lasting stages, and also the one that has cost us financially. We are not quite certain how he does it, but Jack-Jack manages to get holes in his socks incredibly fast – as in he wears them two or three times. I think our family gets the award for the most purchased socks in a year.
The Many Stages of Autism – Our Current Stage is the Offense Stage
Jack-Jack is a very soft child. He gets his feelings hurt when I roll my eyes or correct him. If I yell to him when he is in another room, he will tell people that I yelled at him. He will hold onto this offense until the next person offends him. It wouldn’t seem so bad, but the whining and crying that comes with this is overwhelming.
Jack-Jack took this photo on my phone. He likes to take photos when he is upset to show us and others how we have upset him.
There have been so many more stages through the years, but we tend to forget them because he immediately is in another stage that we are trying to navigate.