I have been in this situation many times with my son J. I have had to find new providers and services for him several times during our autism/ADHD journey. It hasn’t been easy, and I’ve reached out in different ways to different people and organizations over the years. I thought it would be helpful to share how I’ve found services in case it will help other parents.

Searching online is always an option for finding services, however, you may or may not find the best information that way. Here are some other ways I have successfully found autism and ADHD programs and services for my son.

1. Reach out to other parents of autistic/ADHD children for recommendations

I have found that recommendations from other parents is one of the best ways to start finding providers when I needed new care or services for J. Of course, when he was first diagnosed, I didn’t do this because I didn’t know any other parents of autistic children. However, as I’ve made friends in the autism community, this has been a great step to take whenever a new need has arisen.

2. Talk to the special services/education director or speech therapist at your child’s school

If your child is receiving services at school through an Individualized Education Plan (IEP), then talking to the school’s special services director or even your child’s speech therapist can provide you with valuable information. They know so many resources and providers in your community, and they can give you contact information to get you started. I found them so helpful when my son was in elementary school.

3. Ask your autistic child’s case manager if your child has the Medicaid waiver

If your child has an autism Medicaid waiver, I found our case manager to be a wealth of information. Even if the services or care I was looking for wasn’t something covered by the waiver, she knew so many resources in the community and could point me in the right direction. It was usually a good starting point for me to inquire and do additional research.

4. Call your health plan’s member line

Believe it or not, I’ve found good services and providers by calling my health plan’s member services line and talking to a customer representative. The good thing about doing this is that I knew what the insurance coverage would be for the care I was seeking, and the providers were in-network. Some representatives are more helpful than others, but this could be a good option especially if the care is going to be more expensive and you want to be sure you know what your benefits cover.

5. Call your local autism and/or ADHD organizations to find services

Another way to find autism and ADHD services or programs in your area is to contact your local autism and ADHD organizations. Most states have a local chapter of the Autism Society, and many areas may have local or regional organizations. I used to serve on the board of directors for the Autism Community Connection, which is an autism organization serving the county I live in. We received calls and emails often from parents asking for recommendations and information about care and other resources in our area.

Once you have recommendations, you can then talk to your child’s doctor about their thoughts and possible referrals (depending on your health plan’s benefit requirements if it is a covered service). You may want to reach out to the providers and see if you can interview them

first. I have an article about the process and questions I used to find my son a good therapist. I found doing some homework first and then talking to my son’s doctor usually gave me better results. She said it even helped her in some cases because I found more information that she wasn’t aware of at the time!

It’s so important that you find the care and services your autistic child needs, and then find the provider that will be the best fit for them. Are there other ways you’ve successfully found autism care and services for your child? If so, leave a comment so that we can share and encourage each other on this journey.

Additional resources

If you’d like to learn more about some care and services for your autistic child, check out these resources.

The Parent’s Guide to Occupational Therapy for Autism and Other Special Needs (affiliate link)

Caring for Autism: Practical Advice from a Parent and Physician (affiliate link)

The Complete Guide to Autism & Healthcare: Advice for Medical Professionals and People on the Spectrum (affiliate link)

Taking Care of Myself 2: for Teenagers and Young Adults with ASD (affiliate link)

The Autism Mom’s Survival Guide (for Dads, too!): Creating a Balanced and Happy Life While Raising a Child with Autism (affiliate link)

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What is a Picture Exchange Communications System?

According to the Indiana Resource Center for Autism, a Picture Exchange Communications System is “a modified applied behavior analysis program designed for early nonverbal symbolic communication training. It is not a program designed to teach speech, although the latter is encouraged indirectly, and some children begin to spontaneously use speech while enrolled in the PECS program. The PECS training program was developed at the Delaware Autistic Program. PECS training occurs during typical activities within the natural settings of the classroom and the home. The communication training occurs within a broader positive behavioral support context entitled the Pyramid Approach. Training techniques include strategies such as chaining, prompting/cuing, modeling, and environmental engineering.”

How would your autistic child use a PECS?

PECS allows for autistic children, especially those who are non-verbal, to use picture or word cards to ask questions, respond or say things.

If your autistic child is non-verbal, primarily echolalic or has limited speech abilities, PECS may be a good tool for them to use to communicate. As children use the picture cards to communicate their wants and needs, they are awarded with the items or tasks they request. This helps to facilitate better communication.

Does PECS support verbal language development?

While PECS is not specifically a speech tool, it can help encourage verbal speech. You still will need your child work with a speech therapist to develop verbal skills.

My son J was highly verbal, so he didn’t use PECS as a system. However, his speech teacher in elementary school did use elements of PECS to teach him social skills, create social stories and use the picture cards to develop visual schedules for him.

Should your autistic child work with a speech or an applied behavioral analyst (ABA) therapist using PECS?

Parents and teachers should be trained by a person who has been through a program to teach PECS. The PECS system is taught in six phases, so it is important to be trained by someone who knows how the system works properly.

The six phases include:

Phase 1: In the first phase, the facilitator and parent or teacher helps the child identify the pictures of the objects they want. Then when they have both the picture and object, the adult will say something like, “Oh, so you want [object]?” to help them better note their need or want.

Phase 2: The second phase encourages the child to select the desired picture of what they want from the communication board and show it to the adult.

Phase 3: In the third phase, the child learns to select the correct picture from multiple options of various types. If they choose the wrong one, the adult corrects them.

Phase 4: During the fourth phase, the child learns to communicate “I want” when handing the picture to the adult. This could be with verbalization or sign language.

Phase 5: In this phase, the child learns to use the pictures to answer the question of “What do you want?” by using a sentence strip.

Phase 6: In the final phase, the child acquires the skills to communicate with the pictures to answer the following questions:

• What do you want?
• What do you see?
• What do you have?

When you look at the six phases, you can understand why it’s important to have a trained facilitator teach you and your child how to use the program.

How do you find a PECS system facilitator?

If you’d like to teach your autistic child how to use the Picture Exchange Communications System, one place to start is with your child’s Special Services director and teacher at school. They may know of local facilitators through ABA centers, occupational therapists, speech therapists or others who are trained to teach PECS. Their special education teachers may also be trained to teach PECS.

You also could reach out to your state’s local chapter of The Autism Society or another local autism advocacy group to see if they have a list of facilitators in your area. Many times, they have these resource lists available for parents.

Have you tried PECS with your autistic child? What was your experience and what advice would you give other parents? Leave a comment below to share and encourage each other on this journey!

Additional resources

Want to supplement your PECS system or try a modified version? Take a look at these resources available.

Smile4autism Visual Communication Book,162 ASD Laminate Icon Picture Cards (affiliate link)

PECS® Starter Kit- Picture Exchange Communication System® (affiliate link)

Smile4Autism Small 1.5″x1.5″ Loose Visual Picture Cards (affiliate link)

Large Kids Visual Schedule for Classroom & Home School (affiliate link)

The post How a Picture Exchange Communications System can help your autistic child appeared first on Autism & ADHD Connection.

Who provides nutrition counseling for children with autism?

If you are looking for nutrition counseling, the best expert to see is a registered dietitian (RD) or registered dietitian nutritionist (RDN). According to the Cleveland Clinic website, both are a credentialed specialist who “apply their knowledge of nutrition to develop dietary strategies to meet the health needs of populations and individuals.”

Dietitians provide food education, meal planning and other services related to nutrition. For those who specialize in working with autistic children and adults, they also can help with the following:

• Identifying nutrition deficiencies
• Reducing mealtime stress
• Creating meal plans for specific diets if your child has been diagnosed with a digestive issue
• Helping parents expand their child’s food choices
• Decreasing anxiety related to food

When should you consider nutrition counseling for your child?

My son J went through a period where he lost a lot of weight due to decreased appetite from a medicine along with a stressful social situation at school. We were really worried about him since he was eating so little, and we wanted to maximize the nutrition in the foods when he did eat. His primary care doctor referred him to a dietitian at our local hospital system. She was great about teaching him how certain foods packed the nutrients, especially protein, that he needed. She developed a plan for him with the foods he liked and when he would generally eat. He didn’t follow everything, but I felt much better that he was eating food that was providing his body the vitamins and minerals he needed. He finally got through that phase and now eats more and has expanded his palate to a larger variety of food.

So when should you consider nutrition counseling for your child with autism? You may want to seek a registered dietitian’s help when:

• Your child is diagnosed with a gut or digestive issue.
• You feel like your child is not getting enough of the nutrients they need for proper development.
• Your child is struggling with stress and anxiety related to food.
• You want to work with a dietitian to encourage your child to eat more new foods.
• Your child struggles with eating due to food allergies.
• You need help with meal planning for your child to ensure they are getting the nutrition they require.

How can you find a dietitian for your child?

Dietitians work in a variety of settings. You can find one through any of the following ways:

• First start by asking your child’s primary care physician or pediatrician for a referral to a registered dietitian.
• You could also look on your health plan’s website or call the member services line to find out which dietitians are in-network nearby that are covered by your insurance.
• Ask other parents of autistic children in your area who you know through school or activities if their children have ever seen a dietitian and if they could recommend the one they saw.
• Call your local autism organization. Most of them have lists of local resources, so they may be able to point you to local registered dietitians.
• Inquire to your child’s case manager for the autism waiver to see if it is a covered service in your state.
• Search for RDs who are available in your area and research them online.

Have you sought nutrition counseling for your child with autism? What was your experience and what tips would you give other parents for finding nutrition counseling? Leave a comment below so that we can share and encourage each other on this journey.

Additional resources

Do you want to find out more about this subject? Check out these resources that are available.

Special-Needs Kids Eat Right: Strategies to Help Kids on the Autism Spectrum Focus, Learn, and Thrive (affiliate link)

Autism Recipe: Using Trust and Joy to Take Control of Wellness (affiliate link)

My Magical Foods – Get Picky Eaters to Choose Veggies and Fruits! (affiliate link)

The Disconnected Kids Nutrition Plan: Proven Strategies to Enhance Learning and Focus for Children with Autism, ADHD, Dyslexia, and Other Neurological Disorders (affiliate link)

The post When should you consider nutrition counseling for your autistic child? appeared first on Autism & ADHD Connection.

My son J has ultra hearing, and it was very bad when he was younger and before his ears were desensitized through working with an occupational therapist. His school psychologist once told me that with his hearing sensitivities that a loud public toilet flushing sounded to him like a 747-jet taking off to us. He also is sensitive to the hot temperature of food and doesn’t like certain textures of food. Yet, that was all within the normal range of sensory issues for autism.

His friend, however, had many more sensory issues that led him to being diagnosed with sensory processing disorder in addition to autism.

What is sensory processing disorder?

The SPD Foundation defines sensory processing disorder (SPD) as “a condition that exists when sensory signals don’t get organized into appropriate responses . . . A person with SPD finds it difficult to process and act upon information received through the senses, which creates challenges in performing countless everyday tasks. Motor clumsiness, behavioral problems, anxiety, depression, school failure, and other impacts may result if the disorder is not treated effectively.”

There are three types of SPD:

• Sensory Modulation Disorder, which is the most common type of SPD. People who have this type often have difficulty regulating their responses to sensory stimuli because their bodies don’t know which signals to ignore or process.
• Sensory-based Motor Disorder, which occurs when a person has challenges with motor-specific tasks due to misinterpretation of sensory signals.
• Sensory Discrimination Disorder, which is the result of the person not understanding the source of their sensory signals.  

What are the signs of SPD?

So what are the signs of sensory processing disorder that are beyond what you normally see with autism? It can be hard to tell unless your child is evaluated for SPD.

We all have eight sensory systems: visual (seeing), auditory (hearing), olfactory (smell), gustatory (taste and related to our digestive system), vestibular (balance), tactile (touch),  proprioception (body awareness) and interoception (sense of internal state of the body).

When someone has an extreme overwhelming or underwhelming stimulation from one or more of these senses, that could be a sign that they have SPD. I’ve heard it described as a “traffic jam” of sensory overload that the person’s mind cannot make sense of it all.

Is sensory processing disorder related to autism?

Sensory issues are a trait of autism and part of the diagnostic criteria. However, SPD goes further with these sensory difficulties. Some studies have indicated that the co-prevalence of both autism and SPD in an individual could be 69 percent or higher.

Interestingly, SPD is also related to ADHD. Studies have shown that up to 60 percent of people with ADHD also have SPD.

What should I do if I think my child has sensory processing disorder?

If you think your autistic child may have sensory issues that are beyond the normal range for autism, talk to your child’s doctor about it. They may refer your child to a specialist to be further evaluated so that a proper treatment plan can be developed with an occupational therapist and/or other healthcare providers.

Does your child have both autism and SPD? If so, what advice do you have to give other parents? Leave a comment below so that we can share and encourage each other on this journey!

Additional resources

Want more information about sensory processing disorder? Check out these resources.

The Everything Parent’s Guide To Sensory Processing Disorder: The Information and Treatment Options You Need to Help Your Child with SPD (affiliate link)

Sensory Ninja: A Children’s Book About Sensory Superpowers and SPD, Sensory Processing Disorder (affiliate link)

Sensational Kids: Hope and Help for Children with Sensory Processing Disorder (affiliate link)

Self-Regulation and Mindfulness Activities for Sensory Processing Disorder: Creative Strategies to Help Children Focus and Remain Calm (affiliate link)

The Out-of-Sync Child, Third Edition: Recognizing and Coping with Sensory Processing Differences (affiliate link)

The post Sensory Processing Disorder: Does it have a connection to autism?         appeared first on Autism & ADHD Connection.

Do you need a referral for an autism assessment for your child and who does the testing?

First, do you need a referral to have your child tested for autism? In most cases, it is required and usually from your child’s primary care physician, however, you could call your health insurance plan to inquire whether a referral is mandatory.

A psychologist usually conducts the testing. Some neurologists and behavior pediatricians also provide autism evaluations. Most health insurance covers the testing, but you may want to call your plan’s member services line and verify it is a covered benefit for your particular plan and ask about their preferred in-network providers and process for having your child tested.

If you live outside of the United States, this process could look very different for you.

How long do you have to wait to get your child tested?

How long you have to wait depends on the testing provider you choose. Some may be able to see your child in a couple of weeks while others may have a waitlist that could take several months. It’s best to ask when you call to set up an appointment.

What is involved in testing my child for an autism diagnosis?

There are several steps to an autism evaluation for your child. They can include:

• Development evaluation, which many times is provided by your child’s primary care physician as part of the referral. However, the psychologist will most likely also talk to you through an interview at the beginning of the testing to find out more. The American Academy of Pediatrics is now asking pediatricians to screen for potential signs of autism at a child’s 18-month and 24-month check-ups.
• The testing provide will send you an intake packet that will include the initial paperwork that the testing center requires. What is included will depend on how much information they want you to provide or collect before the testing appointment as opposed to after it. For my son J, ours was basic medical information and a questionnaire. (For us though, he was originally being tested for ADHD at age 4. It wasn’t until I talked to the psychologist during the interview that she heard traits of autism and asked to evaluate him for that.)
• On the day of testing, the professional conducting the test will interview you as a parent about their medical history, education, behavior and social interactions. Then, they will use different behavior and autism-specific screening tools through different activities with your child to evaluate them. They will most likely also have you complete a parent questionnaire and send a teacher evaluation with you to have that completed by your child’s teacher. (The questionnaires also may have been sent with the intake materials.)
• The psychologist may also want to observe your child at school or in social settings but not all take this step.

Our experience: having our son J evaluated for autism

Our experience having our son J tested for autism was a bit different because initially he was being tested for ADHD at age 4. (I was right about that, but he received that diagnosis at age 6 because they needed to wait until he was in kindergarten.)

We also had parallel testing of J through a psychologist with a behavioral health center through our medical insurance and then through a school psychologist with the school system at the same time. When I requested the testing through J’s pediatrician, the director of his preschool also requested the evaluation through the school system.

The evaluation at the behavioral center itself followed what I noted above. It was during the interview process that the psychologist asked me if I knew about pervasive development disorders and if she could test J for those. I had mentioned his intense focus on garbage trucks, and that everything was all about garbage trucks. She said, “Tell me more about that.”

While J spent some time with her doing activities, I sat in the waiting room and completed two parent questionnaires. Then she gave me a teacher questionnaire to provide to the director of his preschool.

For the school testing, we met the school psychologist at the elementary school that J would go to for kindergarten. She took him back to do her evaluation and had me complete the parent questionnaires after we had an initial discussion about J. She also asked if she could spend a few hours observing J at preschool. I let both psychologists know I was having him evaluated through both systems, so the school psychologist was willing to share her observation notes with the psychologist at the behavioral health center.

They both ended up diagnosing J with Asperger’s Syndrome, which was good that their evaluation results were consistent. Asperger’s now is part of the autism spectrum disorder instead of a standalone diagnosis.

When do you receive the results of the testing?

Most parents receive the autism evaluation results within a few weeks of the testing, depending on the person doing the testing and whether they had to schedule observation times for the child.

I received J’s within about two weeks of when the school psychologist conducted the observation at his preschool (which happened the week after he was tested by her).

I had an appointment with each psychologist who went through the evaluation report with me and next steps to take after diagnosis. It was a bit overwhelming, especially since I didn’t have autism on my radar when J was being tested.

Has your child gone through an autism evaluation? If so, what was your experience? What is your advice for other parents who are seeking autism testing for their child? Leave a comment so that we can share and encourage each other on this journey.

Additional resources

Looking for some additional resources about this topic? Check these out.

Autism Early Intervention: Fast Facts: A Guide That Explains the Evaluations, Diagnoses, and Treatments for Children with Autism Spectrum Disorders (affiliate link)

A Best Practice Guide to Assessment and Intervention for Autism Spectrum Disorder in Schools, Second Edition (affiliate link)

An Early Start for Your Child with Autism: Using Everyday Activities to Help Kids Connect, Communicate, and Learn (affiliate link)

Autism Reimagined: Breakthrough methods for parenting kids with autism spectrum disorder with less frustration and better understanding (affiliate link)

The post Autism Evaluation: What to expect when your child is tested for an autism diagnosis appeared first on Autism & ADHD Connection.

What is recreational therapy?

According to the National Council for Therapeutic Recreation Certification, recreational therapy is “a systematic process that utilizes recreation and other activity-based interventions to address the assessed needs of individuals with illnesses and/or disabling conditions, as a means to psychological and physical health, recovery and well-being.”

Their website notes, “the purpose of the RT process is to improve or maintain physical, cognitive, social, emotional and spiritual functioning in order to facilitate full participation in life. Services are provided or directly supervised by a Certified Therapeutic Recreation Specialist (CTRS).”

What are examples of recreational therapy?

A recreational therapist, or CTRS, can use a wide array of activities as part of a child’s recreational therapy. Those include sports (e.g., karate, basketball and more), games, crafts, or the arts (e.g., music, dance, painting and more). They sometimes will even base the therapy on interactions with animals or outings into places in the community with the child.

I remember looking into recreational therapy for my son J with his case manager for the Medicaid waiver. I liked the idea of it, but we instead chose music therapy (which can be within recreational therapy), patient assistance and care (PAC) and behavioral therapy with his waiver benefits. Also, at the time, he was taking martial arts classes at our local YMCA, so he was involved in an individual sport. I’ve known others who have had recreational therapy for their autistic children and were really happy with the results.

How can recreational therapy benefit my child with autism?

Recreational therapy can provide many benefits for your autistic child. They can include:

• Increases your child’s self-esteem
• Makes your child feel included
• Supports independence and decision-making
• Reduces stress and anxiety
• Improves physical health if participating in a sport or other physical activity
• Promotes a better quality of life
• Increases socialization and social skills
• Helps sensory regulation depending on the activity used in the therapy
• Assists with better body awareness if participating in dance, gymnastics or other activity that uses balance
• Improves focus and attention if using martial arts or other activities that require self-discipline

Where do I find recreational therapy services?

If your autistic child has a Medicaid waiver, then talk to  your child’s case manager. They will have a pick list that includes providers in your area that offer these services.

MyRecreationTherapist.com is a website that lists CTRS that you can search. You have to set up a free account to get access to their directory. This may be a good way to find one if your child doesn’t have the Medicaid waiver but are interested in this type of therapy for your child.

Have you tried recreational therapy for your child with autism? If so, what was your experience? Leave a comment below so that we can share and encourage each other along this journey.

The post Recreational Therapy: What Is It and How Does It Benefit Those with Autism? appeared first on Autism & ADHD Connection.

When my son J was younger, we enrolled him and his brother in holiday camps during the year-end holiday and spring breaks. It not only gave him something fun to do, but it gave my husband a much needed respite during the week since he was the stay-at-home parent. J mostly enjoyed his days at camp, and we usually enrolled him for about three days each week. He was able to play with other kids, learn something new and enjoy a day of more structured activity.

Why consider a holiday camp for your child with autism and ADHD?

Camps provide a lot of benefits for autistic and ADHD kids – as well as you the parent too. Here are some benefits to take into account as you decide whether a holiday camp would be good for your autistic child:

1. Maintain a routine schedule

Going to camp helps you to maintain a more normal routine for your autistic child and give them structure to their day. If you enroll them in the same camp for each holiday or school break, then they will learn the days’ cadence and routines and look forward to going back to the camp each year. We did this with our son J with most holiday and school breaks at our local YMCA. For summer camps, we had more to choose from, and for several years he went to the summer camp at my work that was run by the YMCA.

2. Give them a chance to practice social skills

Because they will be interacting with other children (and new children who they don’t always see like at school), it’s a great opportunity for them to socialize and practice their social skills.

3. Help them learn independence

When a child is at camp, they are away from their parents and have to learn new ways of doing things. That can be a great way to learn independence, especially as many camp counselors have older children be responsible for their own things in their room at the camp.

4. Boost their confidence

Learning new things and interacting with others is a great way for autistic children to boost their confidence by attending camp.

5. Keep them from getting bored

Attending a holiday camp can keep your autistic and ADHD child from getting bored during the day. They have lots of activities and play at camp to keep them entertained and active.

6. Increase their skills

If your child attends a specialty camp for gymnastics, soccer, drama, dance, music or other specific activities, they can learn new skills.

7. Provide childcare

Whether you have to work during your child’s school breaks or just need some time to get things done or rest, holiday camps can be a blessing for parents who need help during that time.

Finding holiday camps

So how do you find holiday camps in your area? Many camps post information online, so you can search for them in your area or check calendar of events through your community or local media. A lot of YMCAs offer camps during holidays and school breaks. Your school system or local parks department may offer them as well. Here are some other ways and listings from VeryWellHealth to find camps for autistic children.

Have you enrolled your child with autism and ADHD in holiday camps before? What was your experience? Leave a comment below so that we can share and encourage each other along this journey.

The post Should you enroll your child with autism and ADHD in a holiday camp? appeared first on Autism & ADHD Connection.

Maximize your health insurance coverage

The first place to start is with your health care benefits. I found it helpful to call and talk to a member services representative to ask questions about which treatments, medications and services are covered. I have checked my health plan’s website but found it difficult to locate specific information about our benefits on there. Even though it takes more time, I think making the call was much more productive and informative for me. If your health plan has a comprehensive website, then you may be able to get all the information you need from there.

Also, be sure you understand your deductible and any coinsurance/copays. Because we had higher usage of care and services, we ditched the health savings account (HSA) that we had through my employer and instead chose the health reimbursement account (HRA)/preferred provider organization (PPO) plan. Although the premiums were a bit higher monthly, our services were covered at 90 percent for in-network providers once we met the deductible (so our share was 10 percent). With the HSA, we had to pay 20 percent in coinsurance for in-network providers and much more for any out-of-network providers. We ended up paying much more with the HSA instead of the HRA.

In other words, take a close look at the health insurance options you are offered and choose the best one for your family based on the overall benefits and costs and not just the monthly premium amounts.

Consider applying for your state’s Medicaid autism waiver

If you haven’t already applied for your state’s Medicaid waiver for autism services, you should consider applying as soon as possible. Some states have long wait lists, so it could take a year or more to start receiving services for your autistic child.

The waiver can cover services and treatments not included in your health insurance benefits, like respite care, patient and assistance care (PAC), music therapy, additional behavioral therapy, recreational therapy and so much more.

For more information about Medicaid waiver for autism services, check out the 7 reasons to apply for your state’s Medicaid Waiver for your child with autism blog post.

If you already have the Medicaid waiver for your child, you might want to read this blog post: Best ways to partner with your child’s Medicaid Waiver case manager. This explains how you can work with your child’s case manager to ensure you are making the most of these benefits.

Leverage services available through your autistic child’s school

You should ensure that you make the most of any services available through your child’s school system. For instance, can they obtain speech therapy there instead of through your health insurance? Does your child’s school offer social skills groups that they could participate in instead of going through a behavior specialist using your insurance? Do they offer any tutoring services during study hall if your child is in junior high or high school?

Using these services through your child’s school will save you out-of-pocket costs in the long run – and you are already paying for them through your taxes!

Include a medical sinking fund in your budget

One way to continually put money aside to pay for the care and services your child with autism and ADHD needs is by having a medical sinking fund in your budget.

What is a sinking fund? These are categories in your budget that account for regular expenses that don’t necessarily come monthly but still need to be accounted for on a monthly basis to build up the money to pay for them. Those can include car repairs, quarterly insurance payments, annual subscriptions, medical expenses, vacation and more. (For more information, see my article about sinking funds on Medium, where I write about personal finance topics.)

I put money from each paycheck into our medical sinking fund in our You Need a Budget (YNAB) budget and also add money from my annual bonus check to that category. It really helps to pay for the medical invoices and prescriptions as they come in throughout the year.

Apply for autism grants and scholarships

Did you know there are autism grants and scholarships to help you pay for a variety of care and services for your child with autism?

You can find out more details – including the sites and links to apply – in this blog post.

Check to see if your child qualifies for Social Security Income

If your child is more profound on the autism spectrum, they may meet the disability requirements for Social Security Income (SSI). SSI requirements also have strict income limitations for your family as well. However, if your child does meet the requirement and you as parents meet the income level criteria, it would be good to go through the process to apply for SSI. You could use that income to help pay for the care and services your child needs.

To find out more, check out this blog post about SSI.

Use crowdfunding for really big expenses

I have seen parents of autistic children successfully use crowdfunding for really big expenses like raising money to obtain an assistance dog for their child.

Here is an article on the GoFundMe website that talks specifically about setting up a campaign for autism and some examples for how parents or loved ones have done this successfully. I also note a resource below that gives more information about the various crowdsourcing sites and how to set up a campaign.

One word of caution – be sure to understand the tax implications for the money you raise. You will have to pay taxes on it, so you can discuss with an accountant if you anticipate raising a lot of money (for example $20,000 or more for an assistance dog).

Do you have any other ideas about how to pay for care and services your child with autism and ADHD needs? Leave a comment below so that we can share and encourage each other on this journey!

Additional resources

Want to dive deeper into this topic? Check out these additional resources for more information.

Autism and Your Family Finances (affiliate link)

Funding Autism Treatment (affiliate link)

Making Them Pay: How to Get the Most from Health Insurance and Managed Care (affiliate link)

When the School Says No . . . How to Get the Yes!: Securing Special Education Services for Your Child (affiliate link)

Crowdfunding Basics In 30 Minutes (In 30 Minutes Series): How to use Kickstarter, Indiegogo, and other crowdfunding platforms (affiliate link)

The post How do you pay for all the care and services your child with autism and ADHD needs? appeared first on Autism & ADHD Connection.

Our experience

Our son J was diagnosed with ADHD two years after he was diagnosed with Asperger’s Syndrome. I had originally taken him to be tested for ADHD at age 4. This was because he was extremely hyper, incredibly impulsive, and distracted and inattentive at preschool. In my heart, I knew he had ADHD.

However, the psychologist had to hold off on an ADHD diagnosis once she diagnosed him with Asperger’s Syndrome. Asperger’s has a hyperactivity component to it, and she couldn’t be sure he had ADHD too until he was in elementary school and could see how he did there. So, we had to wait two years before he was diagnosed with ADHD.

Since I had already been through what I felt like was the tougher diagnosis of autism (because I didn’t know much about it, and it was a surprise), dealing with the ADHD diagnosis was easier for me. I knew the education drill and how to proceed with getting J the help he needed.

ADHD education: Finding credible resources

One of the first and best things you can do after a diagnosis is educate yourself about ADHD. There is a lot of information, but not all of it is good. Therefore, you want to be sure that you are learning from credible resources.

A great resource is CHADD (Children and Adults with Attention Deficit/Hyperactivity Disorder). CHADD is an organization that provides ADHD education to healthcare professionals and patients, family support programs and advocacy for the rights for people with ADHD. This was one of my go-to places for good information and help for ADHD.

Another wonderful online place for information is the ADHD Resource Center from the American Academy of Child & Adolescent Psychiatry. It provides a wealth of articles and videos about ADHD, and it offers a parent’s guide for ADHD medication.

The Centers for Disease Control and Prevention also offers a section about ADHD on its website. It is a good place for materials to increase your knowledge about ADHD.

Dr. Russell Barkley is a renown authority on ADHD. He has several books available about the subject. I read his book Taking Charge of ADHD (affiliate link) when J was first diagnosed, and I found it so helpful.

If you are looking for a good book to help your child better understand their ADHD, check out ADHD & Me. This delightful, illustrated children’s book is about an eight-year-old girl named Malory. Malory describes the ups and downs of having ADHD and how it affects her at school and home. Malory also explains how ADHD makes her feel and how she can have a bad day if she doesn’t take her medicine.

If podcasts are your thing, then here are a few that I’ve listened over the years and found helpful:

• ADHD Experts by ADDitude
• Beautifully Complex (formerly Parenting ADHD) by Penny Williams
• ADHD reWired by Eric Tivers

Talk to your child’s doctor about treatments

Once you have your child’s diagnosis, you want to talk to their doctor about treatments. Many times, this will lead to a discussion about medication. Choosing to medicate your child is a big decision. I covered things to consider and questions to ask your child’s doctor in this blog post.

There are also non-medication treatments for ADHD too, so it will be important to discuss which ones would be a good fit for your child and their needs.

CHADD offers a detailed overview of treatments on their website that you may find helpful.

Why do so many autistic children also have ADHD?

Research has shown that more than 50 percent of people with autism also have ADHD, and that number could be as high as 70 percent.

That is a very high rate for co-morbidity. Why is this happening? That is the question that scientists are asking and trying to find answers. They are looking at genetics and brain development to determine if there is a biological answer to this question. I found this article in Spectrum News intriguing as it highlights some current theories and research ongoing in this area.

I hope that one day we will know more about this dual diagnosis and its causes.

Incorporating ADHD into your child’s IEP for autism

If your child has ADHD only, then they may be eligible for a 504 plan for support and accommodations at school. However, if your child already has an Individualized Education Plan (IEP) for their autism, then you can incorporate some accommodations for their ADHD into their IEP.

We did this for my son J. When he was in elementary school, we added movement breaks during the day to his IEP. Another important accommodation we included was that recess could not be taken away from him for disciplinary or other reasons. He needed to be able to run and move during that time to help him better focus during the day. I had to fight for that to be added and then in his first-grade year, I had to actively enforce it when his teacher kept taking recess away for discipline.

Discuss accommodations with your child’s special education team and teacher to determine what is best for your child and to see if an addendum can be added to the IEP if your child receives an ADHD diagnosis off cycle of the IEP discussions.

Taking these steps can all go a long way to help you better understand ADHD and ways to help your child or teen. If you have other suggestions to help parents, leave a comment below so that we can share and encourage one another along this journey.

Additional resources

In addition to the ones that I listed above, here are some more resources that could help.

ADHD Parenting a Complex Child: Learn to Become a Yell and Frustration-Free Parent (affiliate link)

Raising a Child with ADHD: A Modern Approach for Parents to Understand, Discipline, and Empower Kids for Success and Happiness in School and Life (affiliate link)

Parenting a Child with ADHD: How to Prepare Your Child for School Life, Integrate Executive Functioning Skills, and Foster Successful Friendships (affiliate link)

A Dragon With ADHD: A Children’s Story About ADHD (affiliate link)

Train Your Dragon to Focus: A Children’s Book to Help Kids Improve Focus, Pay Attention, Avoid Distractions, and Increase Concentration (affiliate link)

The post What to do when your child receives an ADHD diagnosis appeared first on Autism & ADHD Connection.

Prevalence of autism among those with Down Syndrome

Autism diagnoses among children with Down Syndrome has been growing. The U.S. National Institutes of Health estimates that about 16 percent of those with Down Syndrome also have autism.

According to the Mayo Clinic, Down Syndrome “a genetic disorder caused when abnormal cell division results in an extra full or partial copy of chromosome 21. This extra genetic material causes the developmental changes and physical features of Down syndrome.”

Researchers have found no single cause of autism. They believe it is caused by a combination of genetic and environmental factors. The prevalence of autism is also growing, so it is probably not a surprise that more children with Down Syndrome are also being diagnosed with autism.

How is autism different for those with Down Syndrome?

While children with Down Syndrome (DS) who also have autism have many of the same traits as autistic children without DS, they tend to have more severe autism.

Because those with DS already have an intellectual disability, diagnosing autism many times is more difficult and can result in false positives. In many cases, those with DS and autism tend to have less disruption with social, communication and repetitive behaviors than those with autism.

Those with DS and autism are more likely to have the following challenges when compared to autistic children without DS:

• Greater cognition deficiencies
• Slower processing speeds
• Congenital heart problems
• Neurological conditions (e.g., seizures, motor delay, swallowing dysfunction)
• Respiratory issues
• Eye conditions

Talk to your child’s doctor to determine if your child should be tested if you think your child with Down Syndrome may also have autism.

Do therapies differ for autism if your child has Down Syndrome?

If your child is diagnosed with both DS and autism, you will need to work with your child’s medical and education team at their school to determine the best type of treatments and therapies for your child.

Many therapies could work for your child as they do for a child with autism. Those could include speech therapy, occupational therapy, cognitive behavior therapy, music therapy and others. In addition, your child may need additional medical treatments for other conditions that are more related to DS. Be sure to develop a dream team for your child that encompasses medical, educational and others to support them and your family.

Additional Resources

Want to learn more about this topic? Check out these additional resources.

A New Course: A Mother’s Journey Navigating Down Syndrome and Autism (affiliate link)

Wonderfully Different, Wonderfully Me (affiliate link)

No More Chasing “Normal” The Emotional Survival Guide for Parents of Children with Autism, Down Syndrome, & All Other Disabilities (affiliate link)

The Down’s Syndrome Handbook: A Practical Guide for Parents and Carers (affiliate link)

The Parent’s Guide to Down Syndrome: Advice, Information, Inspiration, and Support for Raising Your Child from Diagnosis through Adulthood (affiliate link)

If you have a child with Down Syndrome and autism, share your advice with other parents by leaving a comment. This encourages and helps all of us along this journey.

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