Organizations by Professionals and Parents and Additional Websites

 

Organizations by Professionals and Parents!

    Here are a few resources created by both disability professionals and parents like you! This is just a small list of resources, so make sure to talk to professionals and parents like your health care provider, local autism support groups, and local health department.

Navigate Life Texas

    Navigate Life Texas is an organization based around helping children with special needs and their families. They provide lots of information regarding insurance and financial help, family support, transition support, and more! Their blog is a great place to read entries by parents of kids with disabilities for parents of kids with disabilities. They range from day-to-day stories to helpful guides on how to be prepared for events like public meltdowns. Make sure to sign up for their newsletter to get the latest articles sent straight to your inbox!

Texas Parent to Parent

    Texas Parent to Parent (TXP2P) is an parent-led organization that is "committed to improving the lives of Texas children and adults with disabilities, chronic and mental health conditions and other health care needs". They exist to connect families and give them the support and knowledge they need to advocate for themselves and their child. TXP2P utilizes a parent-to-parent model with "parents volunteering to provide support and information to other parents". Parents and caretakers are encouraged to be honest and express their struggles, stress, anxiety, and frustrations that come from trying to raise a child with a disability. Because it is parent-led, members are able to learn from each other and relate on a far more personal level than they would with a social worker or health professional.    

You can connect with them by following this link: https://www.txp2p.org/services/talk-to-another-parent.

Caregiver Action Network

    The Caregiver Action Network (CAN) is a family caregiver organization that is working to improve the quality of life for those who care for individuals with chronic illnesses, disabilities, disease, and other conditions. They exist to help all caregivers "ranging from the parents of children with significant health needs, to the families and friends of wounded soldiers; from a young couple dealing with a diagnosis of MS, to adult children caring for parents with Alzheimer’s disease".

    CAN gives caregivers the resources, education, and peer support they need to take care of their loved ones to the best of their abilities. To get started, you can check out resources such as the Family Caregiver Toolbox and 10 Tips for Family Caregivers!

Additional Websites and Reading

    These are lists of websites, journals, and books for you to look at! There are picture books, books written by parents, academic journals, and websites! Please take some time to look through them to gain a deeper understanding of the autistic community!

Additional Reading for Kids and Parents

My Brother Charlie by Holly Robinson Peete: This adorable picture book is about Callie and Charlie, fraternal twins. The former is neurotypical while the latter has autism spectrum disorder. Callie speaks about her brother and how his brain works differently than others. While he's very good at some things, like knowing the name of every US president and playing piano, he also struggles to do other things like making friends and showing his true feelings. But despite that, Callie knows her brother is perfect the way he is

Benji, the Bad Day, and Me by Sally J. Pla: This is a picture book that focuses on how a sibling of a child with autism may feel. It is about two siblings, Sammy and Benji. Both had a bad day at school. However, where Benji and Sammy's parents built Benji a special play-box to cool down in, Sammy is left out and feels that his parents don't care about how he feels or even if he's there! However, someone soon realizes and has an idea on how to help Sammy feel better.

Autism and Me by Katie Cook BCBA MEd: This is a perfect book for late elementary children with autism and their parents. Autism and Me is full of exercises, quizzes, discussions, and other activities that provide readers with a deeper understanding of what ASD is. The book highlights positive ASD traits while showing children how they can work through some of its challenges as well! Parents can also benefit from the strategies presented in the book like communication skills, developing self-care habits, and navigating school. If your little one needs help navigating their world, this is the perfect place to start. 

Journal of Autism and Developmental Disorders by Springer: This journal is the leading peer-review, scholarly periodical focusing on all aspects of autism spectrum disorders and related developmental disabilities. Its mission is to increase the understanding of every area pertaining to ASD including possible causes, diagnosis advancements, education, psychopharmacology treatment efficacy, mental health services, and more. This journal also seeks to promote the well-being of children and families by publishing articles on topics such as health policy, legislation, advocacy, culture, and more!

Topics in Early Childhood Special Education (TECSE) by Hammill Institute on Disabilities and SAGE Publishing: This peer-reviewed journal focuses on information the improves the lives of young children with intellectual disabilities and their families. It also helps educational and medical professionals improve their services for young children with disabilities. Each issue contains original research, literature reviews, conceptual statements, position papers, and program descriptions.

Additional Websites

https://www.acf.hhs.gov/archive/ecd/child-health-development/watch-me-thrive: A site that talks about developmental screening for children age birth through five. It includes a guide with a very in-depth look at screening measures for your young child.

https://www.readingrockets.org/article/reading-together-tips-parents-children-autism-spectrum-disorder: This easy to use website gives caretakers ways to connect with their child with disabilities through reading. They list some books you can read with your child and how to get them to engage with both you and the reading.

https://www.healthline.com/health/autism/what-to-do-autism-meltdown: Here is a guide on how to handle autistic meltdowns written by the parent of a child with autism. It gives detailed instructions on what to do and how to approach the meltdown and aftermath in a constructive way.

https://autism.lovetoknow.com/Activities_for_Autistic_Children: This site gives caretakers many therapeutic games to play with their child with autism. It goes from birth all the way to teenage years and even provides links to toys and other resources.

Agencies for Individuals with Autism in Texas

 

Life and Education Support

    In Texas, we make sure that students with disabilities and their families are able to live in peace and comfort. For that reason, there are multiple support services these individuals can take advantage of in order to thrive in school and in life. 

Disability Rights Texas

    Disability Rights Texas (DRTX) is "the protection and advocacy agency for Texans with disabilities" created in the 1970s. This agency was inspired by a news story covering the destitution and abuse going on in homes for children with disabilities. In 1975, Congress passed a law "saying that every state in the US needed to have an agency to protect and fight for the rights of people with disabilities". DRTX's main mission is to "help people with disabilities understand and exercise their rights under the law, ensuring their full and equal participation in society". 

    Disability Rights Texas is a great source for caretakers since it covers areas such as accessibility for individuals with disabilities, education, healthcare, community living, housing, employment, and more. 

    In regards to education, DRTX provides families of children with disabilities advocates and attorneys to improve academic opportunities. They work to ensure children with disabilities are not abused or secluded by school staff, are able to obtain proper assistance through assistive technology, have assistance transitioning to college and life outside of school, and more. 

    Visit their website at https://www.disabilityrightstx.org/en/home/.

    Apply for their services:

• Online by filling out an intake form . Visit https://securec24.ezhostingserver.com/drtx-org/WebIntake/ to apply
• By phone by calling 1-800-252-9108 and following their instructions
• Using a Sign Language Video Phone. The Sign Language Video Phone number is 1-866-362-2851. The Purple 2 Video Phone number is 512-271-9391. They are available Monday through Friday from 9 a.m. to 4 p.m. Central Time
• If the previous options are not accessible to you, you can request an accommodation for an alternative way to apply for services by emailing info@drtx.org

SpedTex

    SpedTex is the Special Education Information Center for Texas. It is a collaborative project between the Texas Education Agency and Region 10 ESC. Their goal is to "provide caretakers and educators with high-quality resources to enable students with disabilities to achieve the highest outcome". They also help connect families to special education partners and groups in the community. Check out their website to watch special education webinars; find events online and in the community; and learn more about Child Find, a resource for screenings, public awareness activities, and information about Early Childhood Intervention. 

Visit their website at https://www.spedtex.org/.

To contact SpedTex:

• Call 1-855-773-3839 to speak to a SpedTex representative
• Create a MySpedTex account 
• Visit the TEA/SpedTex offices at 1701 N. Congress Avenue, Austin, Texas, 78701
• Fill out an email form

The Power of the Law

 

Laws and Policies Regarding Individuals With Disabilities

    Did you know that those with disabilities have laws protecting them and their rights? As a caretaker of a child with autism and/or other disabilities, it is incredibly important to know what laws and bills have been passed to allow your child to get the help they need to succeed in school and in life.

Individuals with Disabilities Education 

Improvement Act (2004)

    The Individuals with Disabilities Education Improvement Act (IDEIA) is a law established in 2004. This is a law that is followed in every state, not just in Texas. This law makes sure all students with disabilities receive a free public education that is tailored to their individual needs. Your student has the right to be placed in a Least-Restrictive Environment (LRE). This means they will be able to learn alongside their neurotypical peers in order to socialize and learn with the general public. 

    IDEIA ensures that the student and their caretakers' rights are protected at all times. IDEIA also entitles your child to receive their tailored education and early intervention services (EI) while in an LRE. 

    In an educational setting, you as a caretaker are allowed to exercise your rights under IDEIA. A frequent example is creating and updating an Individualized Education Program (IEP) for your child. Visit this post to learn more about IEPs. An IEP can be updated at least once a year. You as a caretaker can call a meeting discussing the IEP at any time.

Section 504 of the Rehabilitation Act

    Section 504 is a federal law that states no student with any disability shall be excluded, discriminated against, or denied any benefits because of their disabilities. People with disabilities shall not be deprived of any of their civil rights and their needs shall be met just as adequately as students without disabilities. Those who need it can create a 504 plan. 

    504 plans can be created for those with physical, mental, developmental, and emotional disabilities. In order to create one, the individual must prove they are unable to get an appropriate education due to their disability. Because this is a federal law, 504 plans cannot be denied or ignored (as long as the school is federally funded. Religious schools that are not federally funded are exempt from this). They can be temporary, long-term, or permanent and can be used at work as well. Individuals with autism can create a 504 plan if needed. 504 plans for those with autism may work if they are able to function with a relatively smaller amount of help. If the individual requires a substantial amount of help to succeed, then a 504 plan would not be the best option.

The Americans with Disabilities Act (1990)

    The Americans with Disabilities Act (ADA) is a federal law that keeps people with qualified disabilities (e.g. ASD, drug addiction, and/or cerebral palsy) from being discriminated against in areas such as work, school, public transportation, public accommodations, and telecommunication. In regards to education, ADA applies to public schools and non-religious private schools but not to religious schools. This means that if your student attends a religious institution, said institution can discriminate against the student under ADA standards. 

    The ADA cannot evaluate and place your child into any special education programs. However, it does give a list for reasonable accommodations like modifying schoolwork, having learning and testing aides, and supplying students with impaired vision books written in braille. 

Sources:

• https://www.naset.org/fileadmin/USER_UPLOADS_PROTECTED/Advocacy/Module_1/Unit-1/Introduction_to_SPED.pdf
• https://tea.texas.gov/academics/special-student-populations/section-504
• https://www2.ed.gov/about/offices/list/ocr/504faq.html
• https://sites.ed.gov/idea/about-idea/
• https://www.dol.gov/general/topic/disability/ada#:~:text=The%20Americans%20with%20Disabilities%20Act,local%20government'%20programs%20and%20services.
• https://dredf.org/legal-advocacy/laws/a-comparison-of-ada-idea-and-section-504/

Student Educational Services

 

Educational Services For Students 

With Autism

         Students with ASD often need a little more help with school than those who are neurotypical. That is why school systems across the nation have implemented various academic services that are there to help you and your student thrive!

    Here are some educational services that will be incredibly beneficial to your child's success throughout their school career.

The Individualized Education Program

    

    An Individualized Education Program (IEP) is necessary to have before your child receives any other special education services. IEPs are individual plans created between the caretakers and other educational professionals. Together, you will create a specialized path for your student with autism. 

    What could be in an IEP? An IEP may include:

• Annual goals for what the child should be able to achieve
• The services that will be provided to the child like supplemental education, special aids such as headphones or stress toys, and a modified lesson plan
• When the services necessary will kick in and how long they will last
• If the child will need some time to learn separately from their peers

Keep in mind that your decision to create and check on an IEP for your student is legally protected. This means you always have the right to be involved in any educational decision that is made with your child no matter what.

Other facts about IEPs:

• IEPs are only administered to students who have a condition that falls underneath the IDEIA umbrella and who need specialized services to succeed in school.
• Private schools do not create IEPs. Instead, they help students with special needs create whar is called an Individual Services Plan (ISP).
• Colleges do not have IEPs. Instead, students must apply for accommodations through disability services.

Extended School Year

    An Extended School Year (ESY) is just like what it says: A school year that is extended beyond that of an average one. ESYs are custom-made and available only for students with documented disabilities who need more time to learn. An admission, review, and dismissal committee (ARD) will determine what services your student will be able to utilize, including an ESY. This means that not all students who have an IEP in place are eligible for an ESY. The IDEIA states that the requirements are set on a state-by-state basis. If your child is able to get an ESY in Georgia, that does not necessarily mean they will get an ESY in Texas.

    An Extended School Year is not summer school. Instead, it is any time school is not in session (like summer break, winter break, spring break, etc.). If you and educational professionals agree that your child may lose a significant amount of academic skills over any school break, then ESY may be a good option for them. 

    Some questions to consider are:

• Does your student tend to lose knowledge and skills over short breaks like Thanksgiving and spring break?
• Will a break in schooling mess up any progress that your student is making towards their IEP goals?
• Is your student just beginning to master a skill like reading or counting?
• Does your student constantly need help retaining skills during the normal school year?

    Do not be afraid to ask if your child could benefit from an Extended School Year! You never know what could help them reach their academic goals!

Sources:

• https://www.understood.org/en/articles/what-is-an-iep?_sp=60a3de11-15da-42f4-ad48-4b03d337715f.1662845210050
• https://www.parentcenterhub.org/iep-overview/#who
• https://www.washington.edu/accesscomputing/what-difference-between-iep-and-504-plan
• https://tea.texas.gov/academics/special-student-populations/special-education/programs-and-services/extended-school-year-services-for-students-with-disabilities
• https://www.tsd.state.tx.us/apps/pages/index.jsp?uREC_ID=170905&type=d&pREC_ID=2101617&tota11y=true
• https://www.understood.org/en/articles/extended-school-year-services-what-you-need-to-know

How Do I Obtain A Diagnosis?

 

How Do I Get An Official Diagnosis?

    Suspecting that you or a loved one may have autism spectrum disorder (ASD) may be difficult to handle, especially when you don't know where to start. Googling "Do I have autism?" or "Autism test" may only give you a surface-level guess. These results are not official, could be subjective, tend to be broad rather than specific, and may cause the person to be misdiagnosed or not diagnosed at all. That is why it is extremely important to find a professional who will be able to accurately assess the individual and give a personalized diagnosis.

What To Expect

    The diagnosis process for children, adolescents, and adults are similar but each have their own nuances. On this blog, we are going to focus on ASD in children but we will link some resources for adolescents and adults to use as well.

    When you take your child in for an official diagnosis, they will be walked through a process that consists of two parts: A general developmental screening and an additional diagnostic evaluation. The general developmental screening usually occurs during the well-child checkups that all children should have with their pediatrician. During these screenings, your pediatrician will observe your child while making sure that they are meeting the developmental expectations for kids their age. It is beneficial to disclose any family medical history as it will help the doctor make a more accurate assessment. This includes learning disorders, behavior disorders, attention disorders, and ASD. 

Part One: General Check-Up Screening

1. Make sure that you bring in your child for well-child checkups at the appropriate ages. The ages are 9 months, 18 months, and 24 or 30 months. If the medical professional believes that your child may have ASD, they will begin conducting ASD screening at 18 and 24 months.
• An official diagnosis of ASD can be given as young as 18 months. By the time your child turns 2, the diagnosis is far more reliable. However, the final diagnosis may not happen until years later. That is why it's important to bring your child in for well-child checkups as soon as you can. 
2. During screening, the medical professional may catch something that needs a deeper evaluation. The deeper evaluation may be done by a language pathologist, occupational therapist, or other specialists. 

Part Two: A Deeper Evaluation

1. The medical professional will administer testing to the child and give you questionnaires to fill out about you and your child's history. As previously stated, make sure to disclose all medical history necessary to allow doctors to make a more accurate assessment.   
• The testing may include physical evaluations such as blood tests and hearing tests
• Expect the evaluation to cover complex issues. The child will be observed doing daily tasks, given an assessment of their language and cognitive capabilities, and be given medical and neurological exams.
2. Once all of the testing results, medical history, questionnaires, and other resources are compiled and analyzed, the medical professionals will give you their final decision. 

Sources:

• https://www.cdc.gov/ncbddd/autism/hcp-screening.html
• https://www.cdc.gov/ncbddd/autism/screening.html
• https://www.nimh.nih.gov/health/topics/autism-spectrum-disorders-asd
• https://www.autism.org.uk/advice-and-guidance/topics/diagnosis/diagnostic-assessment/parents-and-carers

Let's Take A Peek! What Autism Could Look Like!

 

Autism: What could that be?

    So, what does it mean to have autism? When it is brought up, autism tends to be placed in a negative light. It is frequently used as an insult or is believed to be a consequence of vaccinations. But autism is not bad. It is not something that people suffer from. Just because a person is diagnosed with autism does not mean they and their families will be unable to enjoy life together!

    Autism (officially known as autism spectrum disorder or ASD) is a condition that affects how people develop socially, emotionally, and academically. It is both a developmental and neurological disorder. A neurological disorder affects the person's brain, nerves, and spine. A developmental disorder affects the person's rate of growth physically, mentally, socially, and behaviorally. 

    Remember, the autism spectrum is just that: a spectrum. Some individuals with autism may be able to function mostly or entirely on their own, relying on personal support every once in a while. Others may always require significant help to navigate the world.  No matter what, they are still human.

What Should I look for?

    Autism spectrum disorder does not discriminate. Individuals from all cultural backgrounds, races, sexes, genders, and economic statuses can have it. That is why it is important that if you believe your loved one could possibly have ASD, you should seek a professional diagnosis. The sooner a person is diagnosed, the easier it will be for both the individual and their loved ones to learn how to adjust. 

    There are specific characteristics and signs that someone you know may be on the autism spectrum. These are from the official Diagnostic and Statistical Manual of Mental Disorders (DSM-5). They are common characteristics and signs that those with autism spectrum disorder show. However, just because someone you know shows these does not mean they are autistic. Please make sure to speak with a professional.

Characteristics

• Struggles to communicate and interact with others
• Has a narrow set of interests
• Engages in repetitious behaviors
• Has difficulty functioning in various settings like work, school, play, and other environments

Signs

    Signs of ASD can be split into two categories: Communication/social interaction and restrictive/repetitive behaviors.

Social signs may include:

• Very little or no eye contact
• Not looking or listening to those who are addressing them
• Talking frequently and at length about their interest(s) while not noticing signs of disinterest from the other party
• Being slow to respond to others speaking to them, if at all
• Being unable to imagine anyone else's point of view
• Struggling or being completely unable to understand the actions of others
• Making facial expressions or gestures that do not match what they or someone else is saying

Behavioral signs may include:

• Finding an intense, lasting interest about a specific topic or topics
• Being highly disturbed by any alteration to a daily routine
• Finding it hard to deal with transitions like beginning school or starting a new job
• Having a high or low sensitivity to things like lights, textures, sounds, tastes, clothes, or temperature

Sources:

• https://www.nimh.nih.gov/health/topics/autism-spectrum-disorders-asd
• https://www.cdc.gov/ncbddd/autism/signs.html
• https://www.nhs.uk/conditions/autism/signs/children/