Jamie

Learning how to manage your child’s autism diagnosis is no small task. The signs and symptoms of Autism present themselves differently in everyone so there is no one solution that will work for everyone.

For that reason, it’s important to come up with a unique treatment plan for your child. This includes autism proofing your house and also getting them some toys and gifts that are good for autistic children so they can have fun like normal kids. 

Some things might not work and there may even be times when you feel like your child is regressing. That’s why it’s important to have a support network to help you get through.

Support for Married Couples

It can be hard to focus on your marriage in the aftermath of a a positive autism test. Autism puts a lot of strain on your marriage including:

• The financial strain of having to pay for additional therapies, caregivers, and resources.
• The emotional strain of having to reframe your vision for your family’s future.
• The mental strain of having to tell friends and family about it and figuring out how to weed through other people’s conflicting opinions and find what’s best for your child.

But it’s important to focus on your marriage and keep the lines of communication open between you and your spouse. Not only will this help you, but it will also allow you to be better equipped to help your child.

Here are three ways you can support your marriage during this process:

Take time as a couple

When you’re overwhelmed with the demands of daily life, a “date night” probably falls pretty low on your list of priorities.

But you should still prioritize spending time together as a couple. And this doesn’t have to be anything big; just taking time to have coffee and talk is a good first step.

Don’t let one person manage it all

It’s easy to let one parent fall into the role of managing everything but this is a mistake. Juggling therapy, medical appointments, and IEP meetings is a lot for one person to handle.

Not to mention, you may have other children to care for and a household to run. Share in the decisions and work together as a team to tackle challenges that arise.

Consider counseling

Counseling can be a great resource for married couples navigating an autism diagnosis. It’s helpful to have a neutral third party to help you figure out what needs to be done and deal with any feelings of being overwhelmed that may come up.

Support for Siblings

One of the hardest things about is an autism diagnosis is that often, parents have limited time or energy to devote to their other children. The child with autism needs a lot of support so most of their attention is focused on them.

But siblings face their own unique challenges. More is expected of them and they need help processing their own feelings over the diagnosis. And they may not fully understand what is going on with their brother or sister.

Here are ways you can support your other children:

Talk with them often about the diagnosis

It’s important to talk to your other children about the diagnosis. And this is not just a one-time conversation, it’s ongoing. There are a number of books that can help them understand autism better and open up new conversations.

Find a sibling support group

As they get older, your other children might benefit from attending sibling support groups. This is a great way for kids to make friends and find other kids they can relate to.

Consider consulting a professional

If you feel like your child is struggling with the diagnosis or acting out, you might consider working with a professional.

Finding Support in Your Community

Finding support in your community can come from many different places. This can look like professional support from the doctors, therapists, and educators who help you.

After sharing the diagnosis with family they are often your biggest source of support along with friends, neighbors, churches, support groups, and more.

Here are four ways you can begin to build a support network in your community:

Let other people know what you need

The first step to building a support network in your community is to let people know some of the practical challenges of autism. There are many people who will want to help but they can’t if you never tell them what you need.

Join a support group

Look for a local support group of parents who have autistic children. Support groups are helpful because they allow you to connect with parents who understand what you’re going through and can share their experience and suggestions.  

Look for professional support

Reaching out to educators, therapists, doctors, and other professionals will be a huge help. These are individuals with experience dealing with autism and will be able to help you figure out what your child needs.

Look for online support

If you don’t feel like a lot of local support is available to you, then try looking online. You can connect with other parents on social media and get involved in the autism community.

Conclusion

Your child’s autism diagnosis will have a huge impact on you, your family, and your closest friends. Your role as a parent is changing and many of these changes will seem unpleasant or scary.

You may feel fearful about your child’s future and isolated from other people. This is why reaching out for support is so crucial.

If you’re overwhelmed and not sure where to begin, Autism Response provides an Autism Response Team. By calling their toll-free number, you can speak to a team member in your community. They can provide resources and suggestions to families dealing with autism.

When it comes to sharing an autism diagnosis with family members, the biggest question is usually how and when. For most people, it’s a given that their family needs to know about the diagnosis.

Close family members may have a unique relationship with your child. They are in contact with your child frequently enough that they need to be given this information. But it can be a different story when it comes to friends and acquaintances.

You will regularly come in contact with friends, co-workers, neighbors, and acquaintances.  They may not see your child regularly but you like them and have a relationship with them. So naturally, you may wonder whether it’s appropriate to share your child’s diagnosis with them.

How do you know who to share the news of the diagnosis with? And how do you know if someone is even ready to have that discussion? These are questions many parents wrestle with and it’s a subject we’ll try to shed some light on in this article.

4 Tips for Sharing Your Child’s Diagnosis

Autism awareness has grown greatly over the years and many parents have chosen to talk openly about their child’s diagnosis. But that doesn’t mean this is the path you’ll feel comfortable taking.

Autism affects everyone a little bit differently. If your child is severely affected, you may feel like the signs and symptoms of autism are so obvious that even strangers can pick up on it. But for children who are high-functioning, it may not be immediately apparent that they have autism.

There is no single “right way” to disclose an autism diagnosis. But here are four tips that might help you discover what’s best for your situation.

[Related Article: Good Autism Toys]

Follow your instincts

Sharing your child’s autism diagnosis is a personal decision and you have to do what you feel comfortable with. Do your best to feel people out first and always go with your gut.

Is this someone who can be trusted and has your child’s best interests in mind? Is this someone who will be supportive and keep their opinions to themselves?

If you suspect the answer is no, then it may be best to keep the diagnosis to yourself.

Share on a need-to-know basis

It might be a good idea to share the diagnosis on an as-needed basis. Your child’s autism diagnosis isn’t going to be relevant to everyone you meet.

For instance, your co-workers and the cashier at Target are probably not going to be affected by your child’s autism. However, a trusted babysitter, preschool teacher, or close friend could be affected by this information.

The point is, don’t feel like anyone “deserves” to know about the diagnosis. You have a right to keep private family information to yourself and only tell a few select people.

Share challenges but not the diagnosis

Let’s say your child is a high-functioning fifth grader and you are very selective about who you share the diagnosis with. They start playing basketball and you’re unsure of whether or not to tell their coach they have autism.

It might be helpful to share their challenges without revealing the actual diagnosis. For instance, you could share that they have a very hard time with loud noises and may respond negatively to the buzzer during games.

This allows the coach to anticipate possible challenges so they can respond appropriately without you disclosing all the details.  

Expect a variety of responses

If you choose to share your child’s diagnosis openly, you should expect a mixed bag of responses. After all, many good things can come out of sharing about the diagnosis.

Adults and peers who regularly interact with your child will have a better understanding of your child and how to help them. You’ll likely find that most people are supportive and want to help you.

But anytime you share anything personal, you should expect a variety of reactions. You may share the diagnosis with someone only to regret it later due to their disappointing response.

Friends might make insensitive or judgmental comments. And some people may choose to distance themselves from you after learning about the diagnosis.

Try not to take it personally. As always, remember that other people’s reactions are about them, not about you.

Conclusion

As nerve-wracking as disclosing an autism diagnosis can be, a lot of good can come out of it. It brings greater awareness to autism and can help eliminate stereotypes.

But your first priority is always your child so you should only disclose this information if you think it’s in their best interest. Here are a few questions to consider before disclosing the diagnosis to non-family members:

• Am I comfortable telling this person?
• Is this person even open to having this discussion?
• How does sharing the diagnosis in this situation benefit my child?
• What are the potential downsides or consequences?
• What am I expecting as a result?

Sharing an autism diagnosis with extended family members can be difficult for most parents. You’ve just gone through the emotional process of getting your child evaluated and diagnosed with autism.

Not to mention, you’ve finally reached a point where you accept that your child has autism. And now you have to turn around and share this news with other people who may not react the way you would prefer.

Accepting Autism can be Hard for Family Members

In theory, your family members should be the most supportive and encouraging during this difficult period and you would think that sharing your child’s diagnosis with friends might be more difficult. But everyone knows this isn’t always the case.

Autism awareness has grown quite a bit but misinformation still exists. Some people may feel uncomfortable with the differences in social communication. Others may feel embarrassed at the thought of having an autistic family member.

Or if your child is high-functioning, it may not be immediately apparent to others that your child even has autism. This may compel certain family members to tell you that you’re overreacting or “labeling” your child.

These scenarios are hurtful but to some extent, they should be anticipated. Everyone absorbs difficult news in their own way and everyone will take the news of the diagnosis a little bit differently.

[Related: Great Gift Ideas for Children with Autism]

Tips for Dealing with Negative Reactions

Sometimes, the news of a diagnosis can come as a surprise to extended family members. They don’t live with you and they don’t see the daily signs and symptoms of autism that you see.

The initial conversation may be uncomfortable or strained but it’s still important to share this news with your family. Here are some tips on how you can share your child’s diagnosis with extended family members:

Lower your expectations

This is a tough one for most people because they expect that their family will always support them no matter what. But it’s best to anticipate a range of reactions from family members.

Some family members may feel sad while others may reject the diagnosis altogether. An autism diagnosis challenges their vision of your child’s future and this can be scary for many people.

Ask for their support and let them know what you need but allow them to express and process their feelings.

Explain the basics of autism

If there is no prior family history of autism, some family members may not even be entirely sure what autism is. Explain the basics and how autism impacts your child’s social skills, behaviors, and interests. Emphasize that autism is a spectrum disorder and that the severity of symptoms will vary from person to person.

Explain why a diagnosis is important

Many people are concerned that having a “label” will negatively impact children and hurt their self-esteem. In reality, the opposite is often true.

It can be a relief to put a name to your child’s struggles and to know that they’re actually pretty common. And most importantly, an autism diagnosis will make your child eligible for services and therapies that can help them.

Offer them resources but don’t push it

The Amaze organization offers a Grandparent’s Guide to Autism as well as resources for siblings and extended family members. If they prefer books, Making Peace With Autism by Susan Senator is a great place to start.

However, if they aren’t interested in books or online resources at this point, don’t push it. Maybe they’ll come back to it when they’re ready, maybe they won’t.

Talk to other parents who understand

Making sense of your child’s diagnosis is overwhelming and scary. And navigating difficult reactions from family members only complicates this.

One of the best things you can do for yourself is to spend time with other special needs parents. They’ve dealt with misunderstandings and insensitive comments just like you.

It helps to have someone who understands what you’re going through and who you can vent to.  

Conclusion

Sharing an autism diagnosis with family members can be challenging because you never know how other people will react. We all want to believe our family will be there to support us through the difficult moments.

But sadly, certain family members may not be able to show their support in the way you would like. Everyone is entitled to process their emotions over the diagnosis in their own way. Just remember that their reactions are a reflection of how they feel and not a reflection of you or your child.

And of course, sharing the diagnosis with family members is just the first step. In the next blog post, we’ll discuss how to disclose this to friends and acquaintances.

According to the CDC, one in 88 children are diagnosed with autism in the U.S. As a parent, that certainly doesn’t make your child’s diagnosis any easier to swallow.

It’s easy to feel overwhelmed and wonder what your next steps are. What kind of treatment should you pursue? Can you even afford the right kind of treatment? How are you going to tell friends and family about this?

There is no “right way” to handle an autism diagnosis after an Autism screening confirms your concerns. This process will look different for everyone and what works for one family might not work for another else since Autism symptoms can vary widely among children. Follow along below as this article will offer some practical next steps you can take after receiving an autism diagnosis.

How to Handle the Diagnosis

Parenting a special needs child comes with many daily challenges. The future you imagined for your child suddenly looks very different. Let’s look at six ways you can begin moving forward in the midst of this uncertainty.

Take time to process your feelings

People deal with difficult news in different ways. Some parents find it makes them feel better to immediately jump into research and talk to specialists. However most experts recommend taking some time to process your emotions.

Autism awareness has grown exponentially over the years and parents now have a lot of access to resources and support. Although that doesn’t mean you won’t grieve for the future you thought your child would have. Just know that nothing bad will happen if you take a week to process the diagnosis.

Reach out for support

Many parents find that getting involved with a local support or advocacy group is helpful. You will need someone to talk to but friends and family members may not relate to what you’re experiencing. This is why you need a community of parents who know what you’re going through.

Reaching out to establish a support network will also be a great source of information to help you tackle problems as they arise. Other parents can share what worked for them and they may be able to point you toward specialists or other resources you hadn’t thought of.

Do your homework

After receiving an autism diagnosis it can feel like you are entering a new world with an entirely new language. The sooner you can familiarize yourself with the terminology the better equipped you will be to act as an advocate for your child.

Doing research is great but be mindful of the time you are spending on the internet. It’s easy to become overloaded with information and not all of that information will be relevant or accurate. As you’re doing research always ask yourself:

• Is this information relevant to my child?
• Is it helpful?
• Does this info come from a reliable source?

“Autism-proof” your home

One of the scariest side effects of autism is that it can cause some children to wander. Roughly 48 percent of autistic children will wander from a safe environment. And a third of these children are unable to communicate their name, phone number, or phone address.

These are scary statistics since most autistic individuals don’t have a good sense of how to keep themselves safe. For instance, drowning following a wandering incident is the leading cause of death among individuals with autism.

This is why the National Autism Association is committed to helping families with autistic children who are prone to wandering off. Download their Big Red Safety Box, a toolkit designed to help parents prevent and respond to a wandering-related emergency.

This also includes getting some good autism toys so your kiddo can have beneficial and fun playtime.

Keep accurate records

One of the best things you can do is to keep accurate and organized records. It’s easy to get buried under paperwork from various specialists, doctors, and educators.  

So you’ll want to have a system for organizing important paperwork for your child. This will not only be helpful for the specialists who work with your child but it will also help you.

Treating an autistic child comes with a lot of ups and downs. At some point, your child will regress and it can be easy to forget the progress they have made. Detailed records will allow you to look back and see how far your child has come.

Become an advocate for your child

There are a wealth of resources available to parents of autistic children and you are going to have to be the one to go out and find those resources.

It’s important to start reaching out to specialists and looking into different treatment options. Unfortunately, this may mean getting put on a number of waiting lists. This can be a discouraging process as most people don’t realize how much waiting is involved after an autism diagnosis.

You will encounter setbacks along the way. Friends and family members may not understand and they may not support you the way you wish they would. Doctors may make statements that scare you and make you feel helpless.

At the end of the day, there’s only one option: keep going. You won’t always have all the answers and there is no way to learn everything you need to know all at once. Do your best to be informed, keep doing the next right thing, and trust that you’ll find what you need along the way.

Conclusion

Most importantly, don’t forget to take care of yourself during this process. Parenting a child with autism is challenging but don’t neglect yourself or your other relationships in the wake of an autism diagnosis.

Having a special needs child can cause many parents to work to the point of exhaustion. Ultimately, you can’t help your child if you don’t take care of yourself.

Do activities you enjoy. Continue to make time for your spouse and any other children you have. You are their advocate but you’re also a person with needs of your own.

Finding a way to move forward after an autism diagnosis is challenging but know that help is available. For more information, check out the following resources:

• A Parent’s Guide to Autism

Many people are familiar with some of the common signs of autism. But receiving a diagnosis for your child is a whole new hurdle to overcome.

Unfortunately, there’s no single autism test your child can take to determine whether or not they have autism. Autism is a developmental disorder that shows up a little bit differently in everyone it affects. So you’ll need to have them evaluated by someone with an in-depth understanding of the disorder.

This article will explain why your child needs a diagnosis, how to find the right specialist, and what the evaluation process will look like.

The Importance of an Early Diagnosis

A common question many parents ask is, “Wouldn’t my pediatrician tell me if my child had a problem?” And the answer is yes, if your pediatrician knew about the problem then they would absolutely say something.

Most pediatricians will do a yearly developmental screening on their patients. This is a test that evaluates whether children have the basic skills they should have or if there are delays. But when your child only sees the pediatrician for appointments a handful of times before the age of 3 there is only so much they can observe.

In theory, the developmental screening should alert your pediatrician to any potential problems. But pediatricians know that children develop at different rates. And the reality is, most children who are delayed will catch up to their typically developing peers.

So often, pediatricians prefer to wait and see if the problem gets worse. And this isn’t a bad strategy if you have a typically developing child.

But you’re going to lose valuable time and resources if your child has autism. Autism affects a child’s ability to communicate, interact with their peers, and participate in school.

In order to make sure your child receives the support they need, you want to receive a diagnosis as early as possible. Plus, a diagnosis will give you the resources you need to understand and help your child.   

Finding an Autism Specialist

Finding a specialist to evaluate your child will depend largely on where you live and who is available. There still aren’t that many medical professionals who are specifically trained to diagnose autism.

So the person who is best qualified will likely be the one who has the most experience diagnosing and working with individuals that have autism. This can include several different types of medical professionals including:

• Developmental pediatricians
• Child psychologists
• Child psychiatrists
• Pediatric neurologists
• Certain therapists experienced in dealing with autism

You should start by asking your pediatrician for references. They will likely know of several qualified professionals and may even be able to help you get an appointment sooner.

You can also contact your local school district, regional agencies, and local autism support groups. They may be able to help you access low-cost or even free resources.

Keep in mind, most specialists will have long waiting lists and sometimes it can take months to get into an appointment. Call any available specialists in your area and ask all of them to put you on a cancellation list so you can get in as soon as possible.

What Does the Autism Evaluation Look Like?

Because there is no standard test for autism, the evaluation will vary depending on the specialist you choose to work with. But it will likely include an assessment to rule out any other diagnoses as well as a detailed developmental history.

And the specialist will likely perform an autism diagnostic observation schedule (ADOS). Here is what the process might look like :

• Your child will likely undergo a hearing and vision screening.
• They may also undergo neurological testing and other tests.
• The specialist will conduct a parent interview where you talk about your pregnancy, your family history, and your child’s development over the years.
• During the ADOS, the specialist will spend an hour interacting and doing tasks with your child to observe how they play, communicate, and interact with others.

This evaluation could take place in one appointment or across several different appointments. Make sure you bring any relevant paperwork, your insurance information, and a list of your concerns.

After an Autism Diagnosis

If your child does receive an autism diagnosis, you’ll probably experience a range of emotions. It’s completely normal to feel fearful, angry, confused, and so much more.

The most important thing you can do is learn everything you can about autism and how it will affect your child. Autism Now can help you find free local resources and information about how you can help your child at each stage of their development.

It also is a good idea to find some toys that are good for the development of kids with autism. This is especially important since toys for kids without this condition can often frustrate autistic kids.

Parent support groups can be a great way to receive encouragement from other parents who understand what you’re going through. Other parents can share what worked for them or just offer a sympathetic ear. Facebook and Meetup.com are great places to find support groups.

Another thing to consider is how you’re going to communicate the diagnosis to your extended family and friends. Remember, you really only need to communicate the diagnosis where you believe it will benefit your child.

If your child is under the age of three, you should contact your local Early Intervention office. If they are over the age of three, reach out to your local school district’s special education office.

Most importantly, don’t give up hope. Intervention services and medical treatment can greatly improve your child’s prognosis and quality of life. And your child has you. With the right support network you can be an advocate for your child and help them become the best version of themselves.

“Could my child have autism?”. It’s a common question more and more parents are asking themselves these days and one you should consider if your intuition tells you something isn’t quite right with your son or daughters development.

As autism awareness continues to gain traction, parents now have access to more resources and support. Yet no parent is ever prepared to ask themselves this question.

Considering the possibility that your child may have autism can feel devastating and overwhelming. But recognizing the symptoms is the first step to getting your child the help they need.

This article will explain more about what autism is, common signs to look out for, and what your next steps should be.  

What is Autism?

Autism spectrum disorder (ASD) is a group of complex disorders that usually appear in early childhood. It affects many areas of development including the ability to socialize, communicate, and relate to other people.

Opinions vary on how autism should be treated but most experts agree that early intervention is best. The earlier autism is diagnosed, the earlier treatment can begin. Receiving a diagnosis by 18 months can make a world of difference when it comes to your child’s future prognosis.

Recognizing the signs of autism can be challenging because it affects everyone a little bit differently. But the National Institute of Neurological Disorders and Stroke (NINDS) outlined four main symptoms in children:

• Poor communication skills
• Limited interests
• Repetitive behaviors
• Limited or no verbal skills

Signs of Autism in Babies and Toddlers

Early signs of autism can show up in infancy, although most children won’t receive a diagnosis until ages two or three. Every infant will display different symptoms but there are several key traits that could point to autism.

The earliest sign of autism is when babies won’t engage with their caretakers in the same way typically developing infants do. Here are some common signs of autism in infants and toddlers:

• No waving or smiling
• No cooing, babbling, or making any sounds
• Limited eye contact and facial expressions
• Limited interactions with caregivers or people around them
• Becoming very distressed by certain textures
• Becoming overwhelmed by loud noises
• No response to hearing their own name called

Sometimes, there are no signs of autism in infancy. A baby may appear to be developing typical social skills and then between one and two years old, they suddenly lose those skills. This is known as regression and is a big warning sign for autism.

Perhaps they were waving and making eye contact as a baby but suddenly stop doing that. This is a red flag and a sign you should contact your doctor right away. One study found that regression occurs in 20 percent of children with autism.

Signs of Autism in Children

As children grow older, the signs of autism become more diverse. And unfortunately, children with mild autism are often able to blend into their environment. This means those children won’t receive the help they need.

Here are some of the most common signs of autism in older children:

Non-verbal communication problems

• Avoiding eye contact
• Their facial expressions don’t match what they’re saying
• They can’t pick up on nonverbal cues from others
• They come across as cold or “robotic”
• Their body language is clumsy or they have different ways of moving around

Speech and language difficulties

• Delayed speech and language skills
• Speaking in a different tone of voice or with a strange pitch
• Repeating questions instead of answering them
• Uses grammar incorrectly
• Doesn’t seem to understand humor or sarcasm
• Can’t follow simple directions

Delayed social skills

• Doesn’t seem to be aware of what’s going on around them
• Can’t seem to connect with others or make friends
• Has trouble understanding and talking about their feelings
• Doesn’t seem to hear when others are talking to them
• Doesn’t play pretend, join group games, or use toys that are appropriate for children with autism
• Seems detached and prefers to be by themselves

Rigid or inflexible behavior

• Has to do things the same way every day
• Has trouble dealing with any changes in their environment
• Obsessively lines things up or arranges them in a certain way
• Extremely preoccupied with one interest
• Repeats certain movements and actions over and over

How Boys and Girls Differ

Approximately one in 42 boys and one in 189 girls are diagnosed with autism. This means that boys are five times as likely to have autism than girls are.

Since autism is much more common in boys, diagnosing them tends to be easier. Boys between the ages of two and four usually begin to show signs like sensory issues, poor social skills, and a narrow set of interests.

This becomes more noticeable once they start school and begin interacting with their peers. Common signs in boys include things like poor eye contact and lack of engagement with their peers or caregivers.

But according to behavioral specialists at the Cleveland Clinic, autism isn’t necessarily less common in girls. Girls don’t usually display some of the characteristically male symptoms of autism so they are often misdiagnosed.

One study found that girls with autism tend to struggle more with communication, have a harder time adapting to their environment, and have lower cognitive abilities. For that reason, autistic girls are often misdiagnosed as having a developmental or communication disorder.

If you suspect your daughter might be autistic, don’t discount their behavior just because it’s not typical autistic behavior. Without an autism diagnosis, your daughter’s access to resources and treatment will be limited.

Next Steps for Parents

As a parent, you have the most insight into your child’s behavior. You spend the most time with them and see things that your pediatrician is unable to see during a 15-minute check-up.

So if you’re concerned about some of the behaviors your child is displaying don’t discount these feelings! The best thing you can do is take them in for an autism test, screening or evaluation. Early diagnoses are proving to be critical in the develop of autistic children so never let well-meaning individuals talk you into taking a “wait and see” approach.

You don’t lose out on anything by exploring your options. But waiting and hoping the problem resolves itself could cause you to lose valuable time. You are your child’s best advocate and no one will care about their recovery more than you.

Stay tuned for the next article where we’ll talk about how to receive an autism diagnosis.