TSSUS is the largest organization – worldwide – supporting the Turner syndrome community.
The Turner Syndrome Society of the United States: Advancing knowledge, facilitating research, and supporting all those touched by Turner syndrome.
Resources
In depth information about challenges related to Turner Syndrome.
Learning and Behavior
We hear you.
Employment Challenges and Solutions: A Discussion and Q&A
This discussion of women with Turner syndrome meeting career/workplace challenges covers important topics including how to improve interview skills, collaborating with peers, managing the balance of skills and limitations, workplace communication and accommodations in the work environment. Please contact the office to connect with experienced TS volunteers to discuss career challenges as well as other topics. (800-365-9944)
References: Overview
American Psychiatric Association. (2022). Neurodevelopmental Disorders. Diagnostic and Statistical Manual of Mental Disorders (5th ed., text rev.).
Centers for Disease Control and Prevention (2022). Developmental Disabilities. CDC: Developmental Disabilities
“Difference between Disease, Syndrome, Disorder and Condition.” Wecapable.com. Retrieved January 4, 2023 from Disease/Syndrome/Disorder/Condition
Frolov, L., & Schaepper, M. A. (2021). What Is Specific Learning Disorder? American Psychiatric Association. Specific Learning Disorder
Lyons, H. (2021). How are Developmental Disorders Different than Mental Illnesses? Development Disorders/Mental Disorders
Sulkes, S. B. (2022a). Definition of Developmental Disorders. Merck Manual: Consumer Version. Developmental Disorders
Sulkes, S. B. (2022b). Learning Disorders. Merck Manual: Consumer Version. Learning Disorders
The NVLD Project. What is Nonverbal Learning Disability?
The NVLD Project. For Clinicians and Scientists.
The NVLD Project. Frequently Asked Questions.
References: Developmental and Specific Learning Conditions
1. ADDitude: additudemag.com
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Online screening tools for ADHD and conditions common among individuals with ADHD geared towards children, adolescents, and adults.
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Information on evidence-based interventions for ADHD.
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Information on developmental, specific learning, and mental health conditions common among individuals with ADHD (including NVLD) and common interventions.
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Strategies to address everyday challenges related to ADHD at home, at school, at work, in relationships, and receiving appropriate interventions.
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Experiences of individuals with ADHD and associated conditions.
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ADD provider directory.
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Additional resources for parents, educators, and providers, including educational opportunities and community support.
2. Children and Adults with Attention-Deficit/Hyperactivity Disorder (CHADD): www.chadd.org
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Information on ADHD, related challenges, and evidence-based interventions (including medication, coaching, therapy, and workplace and educational accommodations) for children, adolescents, and adults.
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Detailed information on how ADHD presents differently in girls and women and its impact on treatment needs.
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Information on developmental, specific learning, and mental health conditions that often occur with ADHD, related challenges, and common interventions.
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Experiences of individuals with ADHD and associated conditions.
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Strategies to address everyday challenges related to ADHD at home, at school, at work, in relationships, and receiving appropriate interventions.
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ADHD provider and resource directory.
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Additional resources for parents, educators, and providers, including educational opportunities and community support
3. The NVLD Project: nvld.org
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A list of challenges common among individuals with NVLD and common interventions.
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Recommended strategies to address everyday challenges at home, school, work, and in relationships.
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Information on NVLD from experts.
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Experiences of individuals with NVLD.
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Additional resources for adolescents, adults, educators, and providers, including community support.
4. Learning Disability Association of America (LDA): ldaamerica.org
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Information on specific learning disabilities and developmental conditions often present in individuals with specific learning disabilities (including NVLD.)
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Information on common interventions for specific learning disabilities and related developmental conditions, including school and work accommodations.
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Strategies to address everyday challenges.
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Additional resources for parents, educators, and providers.
5. Aspire: the Female Autism Network: aspirefemaleautismnetwork.com
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How ASD looks different in girls and women, including developmental, specific learning, and mental health conditions common among girls and women with ASD.
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The unique challenges experienced by girls and women with ASD at home, at school, at work, and in relationships.
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Strategies to address those challenges.
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Information on seeking an evaluation, receiving a diagnosis, and getting educational and workplace accommodations.
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Community support (including Facebook).
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Additional resources.
6. Asperger/Autism Network (AANE): AANE.org
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Information on challenges commonly experienced by individuals with ASD and intervention options.
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Educational resources for adults and teens with ASD about common challenges, including getting diagnosed, receiving work and school accommodations, mental health conditions, and relationships with family and friends .
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Educational resources for women with ASD and parents of girls with ASD, including information on how it often presents differently with unique everyday challenges and intervention needs, and how to overcome barriers to getting diagnosed and receiving appropriate interventions.
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Experiences of individuals with ASD.
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Provider directory, including neuropsychologists.
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Community support, including meet ups.
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Additional support for family and friends and providers.
7. Life Skills Advocate: lifeskillsadvocate.com
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Individual executive functioning coaching services.
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Executive functioning workbook for parents, educators, and neurodivergent individuals from preteens to adults.
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Neurodivergent-friendly cookbook.
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Free informational resources, including assessments, educational accommodations, and ways to increase accessibility.
Mental Health Conditions
1. International OCD Foundation: iocdf.org
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Information on OCD, its treatment.
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Information on conditions that often occur with OCD.
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Provider directory.
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Educational resources.
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Resources for family, educators, and professionals.
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Community support.
2. Anxiety & Depression Association of America: adaa.org
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Different types of anxiety and depression and their treatment.
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Provider directory.
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Educational resources.
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Community support.
3. CDC Mental Health: crisislifeline
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Different mental health conditions and their treatments for children and adults.
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The impact that different stressors, including physical health conditions, can have on mental health.
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Tips for coping with common stressors to promote mental health.
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Mental health crisis resources.
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How to get help and provider directories.
References For Medical Professionals
Anxiety & Depression Association of America. Types of Mental Health Care Professionals. Learn more
Kelly, K. Developmental-Behavioral Pediatricians: What You Need to Know. Understood. Learn more
Mental Health America. Types of Mental Health Professionals. Learn more
Ross Kidder, K. Assessment for Adults with LD and/or ADHD. LD Online. Learn more
Seladi-Schulman, J. Occupational Therapy vs. Physical Therapy: What to Know. Healthline. Learn more