Open research questions in Family and Disability Support Research

What the literature leaves open

• Based on the findings of my study, I see opportunities for future investigation incorporating mixed-methods approaches that could further strengthen results by combining qualitative depth with quantitative measures, ultimately supplementing the experiences of mothers raising children with autism. Additionally, future research may use EFA to develop survey questionnaires on environmental, stress, and coping factors.

  Love Beyond Limits: Perceptions on Causes of Stress and Caregiving Capacity of a Mother Raising a Child with Autism Spectrum Disorder · 2026 · DOI

• This research offers a broad investigation into the experiences of parents raising children with Autism Spectrum Disorder (ASD), focusing particularly on the complex interplay between the challenges associated with caring for an autistic child and the consequential impact on parental mental health. The findings emphasise the potential effectiveness of reinforcing both informal and formal support structures, advocating for awareness initiatives to eliminate societal misconceptions, and cultivating a sense of public understanding and acceptance. Moreover, the study highlights the significance of recognizing the diverse needs of parents and actively working toward establishing an inclusive and supportive societal setting, thereby playing a pivotal role in enhancing the overall well-being of families navigating the complexities of raising children with ASD. For practitioners, it is advised that parents undergo counselling and knowledge training before, during, and after their child is diagnosed with autism. This approach would bridge the information gap often experienced by parents, particularly in understanding autism. It would help them develop effective coping mechanisms, navigate the complexities of raising a child with Autism Spectrum Disorder (ASD), strengthen their relationship with their child, understand the importance of early intervention, plan for the future, and reduce stress and anxiety.

  PSYCHOLOGICAL STRUGGLES OF PARENTS RAISING CHILDREN WITH AUTISM SPECTRUM DISORDER · 2026 · DOI

• Our PRT training program went through a rigorous Spanish translation process by a native, fluent Spanish-speaker who is also an expert PRT clinician, but one limitation is that we did not conduct a back-translation process with a different translator.

  Spanish-Language Autism Early Intervention Workshops: Evaluating Outcomes of a Translated Pivotal Response Treatment Program · 2026 · DOI

• Dallas and colleagues aimed to identify the role(s) of fam- ily members in autistic students’ higher education experi- ences, and to examine whether family involvement in these educational settings result in positive outcomes for autistic students, but concluded that the research at the time was too limited to answer either of these research questions (Dallas et al.

  The Role of Family in Autistic Students’ Higher Education Journeys: A Scoping Review · 2026 · DOI

• Evidence-based practice include systematic assessment of all six burden dimensions using validated frameworks, targeted interventions prioritizing time-dependence and emotional burden, and flexible service delivery incorporating technology-based solutions. Health- care providers should recognize caregiving as a significant health risk factor requiring proactive intervention. Review Journal of Autism and Developmental Disorders1 3 Critical practice requirements include comprehensive burden assessment rather than isolated problem-focused approaches, individualized interventions addressing specific burden profiles, and accessible, culturally sensitive service delivery. The interconnected nature of burden dimensions, as demonstrated by Marsack and Hopp’s (2019) evidence linking financial burden to depression and physical health problems, necessitates interdisciplinary approaches rather than single-intervention strategies. coordinated, System-level priorities include developing standardized assessment protocols, establishing sustainable funding for comprehensive support programs, and creating research- practice partnerships for continuous evidence translation. The limited representation of non-Western cultures (19% of sources) emphasizes the urgent need for culturally adapted interventions and diverse research participation. Future development should prioritize national caregiver surveillance systems, particularly in countries like Germany where comprehensive surveys of caregiver experiences and unmet needs remain lacking. Healthcare profession- als require specialized training to recognize and address the unique challenges of adult autism caregiving, moving beyond pediatric-focused approaches to address lifelong support needs.

  Needs, Challenges, Burdens and Interventions for Informal Caregivers of Adults with Autism Spectrum Disorders (ASD): A Scoping Review · 2026 · DOI

• Outcomes to care recipient, autism characteristics. Presence and description of time- dependence, developmental, physical, social, emotional, and financialburden. Type, duration, target burden dimen- sions, and reported effectiveness. Measurement instruments used, and results related to caregiver well-being. Following PRISMA-ScR methodology, the comprehensive search strategy identified 200 records from electronic data- bases (PubMed: n = 62, CINAHL: n = 43, Scopus: n = 95), with an additional 34 sources identified through supple- mentary methods (websites: n = 22, organizational sources: n = 12). Review Journal of Autism and Developmental Disorders1 3 After removing 42 duplicate records, 186 sources were screened by title and abstract, with 127 records excluded at this stage. Full-text retrieval was sought for 59 reports, with 5 reports not retrieved. Following full-text assessment of 54 database sources, 23 sources were excluded (no bur- den/intervention focus: n = 12, professional caregivers only: n = 8, other exclusions: n = 3), resulting in 31 empirical stud- ies meeting inclusion criteria. From supplementary search methods, 34 sources under- went eligibility assessment, with 7 sources excluded (other clinical picture: n = 3, duplicates: n = 3, wrong target group: n = 1), resulting in 27 evidence-based guidelines and policy documents meeting inclusion criteria. The systematic search yielded 58 total sources comprising 31 empirical studies and 27 evidence-based guidelines and policy documents from 17 countries across four continents. The complete source selection process is illustrated in Fig. 1 (PRISMA-ScR flow diagram).

  Needs, Challenges, Burdens and Interventions for Informal Caregivers of Adults with Autism Spectrum Disorders (ASD): A Scoping Review · 2026 · DOI

• Thus, future research should explore the feasibility of a self-directed BPT program that progresses to the recorded behavioral data. Future research should examine whether parents’ self-directed learning is maintained and whether their children’s target behaviors improve in the absence of ongoing researcher contact following initial instruction on using the application. The limitations of this study are as follows. Fourth, because only two sets of parents and children with ASD participated in this study, the external validity of the results is limited.

  Evaluation of a Self-Directed Parent-Training Mobile Application for Young Children with Autism Spectrum Disorder · 2026 · DOI

• A Success Story They do happen! Be brave! Stay the course! Many of us as parents are fearful when our son or daughter is diagnosed with a learning disability. Will they succeed in school? At work? Will they make friends? What does it take? My son, Scott, is currently 14 years old and in the 8th grade at a school for children with language learning differences. He was identified at an early age as being severely dyslexic, dysgraphic, and having significant visual perceptual difficulties. Intensive intervention was recommended – but no one knew how or where to get the appropriate help. Getting the right kind of help, at the right time, and with the right people, is essential to seeing progress. Scott’s current school and tutoring is entirely Orton-Gillingham based. He is completing his fourth year of this specialized education. This school is an answered prayer – a miracle for him. Not a day goes by that his parents don’t breathe a sigh of relief, and feel grateful. But that was after many blind alleys. When Scott started fifth grade, he was falling behind miserably. He was performing at least two years behind his peers. He went to school every day with a headache and a stomachache. Often there were tears, and he even went to a doctor to see if he was clinically depressed. Since pre-school Scott had received special help in classes, but it wasn’t the right kind of help. He was labeled by the public school system as mildly mentally handicapped, and was placed in a cross-categorical classroom for most of the day. Joining his regular class sporadically was difficult. Friendships were difficult, as he felt different than the other kids. Scott experienced so much stress during the day that he was exhausted after school and withdrew from social situations. Outside activities just took too much energy. In the fourth and fifth grade, I would re-teach him concepts covered during the day, and then homework would last up to three painful hours – with much frustration for both parent and child. After just a few months at his new school, Scott’s personality began to emerge. He looked forward to school, and his energy level after school sky-rocketed. He now lifts weights. He’s part of a swim team. He has friends both at school and through his after school activities. His homework is actually done without any assistance from me. He is self-assured and comfortable with himself. Reading is still hard work, but he can read anything he might need to in the future. His written expression is coming along nicely, and his confidence continues to grow. He is optimistic and hopeful about the future, and not ashamed to be dyslexic. It’s simply one aspect of who he is. He hopes to be a psychologist with prison inmates, or the next Dr. Phil, as he identifies with people who have obstacles to overcome and desires to lessen their struggle. Due to his difficulties, and then being given the tools to unlock his potential, Scott has developed patience and compassion towards others and himself. He is now eager and ready to try his wings in a regular school setting. Scott is a testimony to the change that can happen when children with learning disabilities receive the right kind of help, in a timely fashion. Be committed to finding the right resources and people who see the potential in your child – and stay hopeful! - Julie from Indiana IDEA Parent Guide • National Center for Learning Disabilities • www.LD.org Students in Private Schools • 56 10 Who is this for?

  Parental Engagement in Community‐Based Rehabilitation: Boosting Daily Functioning for Individuals With Intellectual Disabilities in Malaysia · 2026 · DOI

• Tools for the High School Student with Learning Disabilities Our daughter Hillary was in the fifth grade when she was originally diagnosed with a language disability. It wasn’t until she was a freshman in high school that her disability was given a name: Aphasia. Hillary’s Aphasia is both expressive and receptive, meaning that reading, writing, processing information and speaking are all more laborious tasks for her than for other students. At the time of the diagnosis, doctors told us that college was an unrealistic aspiration for Hillary. Hillary’s strong work ethic got her through two difficult years of junior high school. It was clear from the beginning of high school, however, that it was going to take more then hard work and determination to keep Hillary’s self-esteem and desire to succeed intact. The increased work load and more complicated subject matter meant hours of studying every night. The results were barely passing grades and a student who was left feeling defeated and worthless. Although Hillary had an Individualized Education Program, neither she nor I were savvy enough to take full advantage of what it offered. We are very fortunate to live in a school district that offers an innovative high school program called LEAD, an acronym which stands for learning and educating about disabilities. This program, which is unique to Cheyenne Mountain High School in Colorado Springs, is under the direction of the school’s Special Education Department Chair. LEAD is an accredited class made up of college-bound students with learning disabilities and AD/HD. During class time, LEAD students learn about disabilities and their legal rights as students with disabilities. They also learn that self-knowledge and self-advocacy are powerful tools for the student with LD and AD/HD. The LEAD curriculum includes opening up the students’ cumulative folders so they can examine and understand their own test scores and assessments. This information helps them support their requests for the accommodations and modifications they might be entitled to. Students learn about their legal rights under the Individuals with Disabilities Education Act and how to actively participate in their own IEP or 504. LEAD students learn not to rely on teachers and parents to advocate for them. It is a responsibility they take on themselves. During the course of Hillary’s four years as a LEAD student, she developed the habit of writing letters to each of her teachers at the beginning of the semester. These letters explained her disability, what accommodations she needed and why. Accompanying the letter were articles on Aphasia she had found on the Internet. Hillary educated teachers about her disability and they not only accepted her need for accommodations, but encouraged her to use them. LEAD provided a niche for Hillary, a place where she could be accepted and understood. In addition, it taught her to focus on her strengths. One of LEAD’s most important lessons is that a learning disability has nothing to do with intelligence. As Hillary’s confidence and self-esteem grew, she became more successful at dealing with academic challenges and graduated from high school with an enviable grade point average. Since its inception, 95% of the high school’s LEAD students have gone on to college. Hillary is now one of those students. In spite of dire predictions from well-meaning professionals, Hillary is currently a freshman at a four-year college. Each day is a challenge, but the lessons of LEAD have served her well. She confidently explains to each of her college professors about her disability and how if affects her. She does not hesitate to use the accommodations that she knows she is entitled to. Hillary finished her first semester of college with grades that anyone would be proud of. Although LEAD is unique to Cheyenne Mountain High School, it is my hope that some day all schools will offer a similar program that will teach students with learning disabilities the crucial skill of self-advocacy and the importance of self- knowledge. It takes commitment from administrators, parents and teachers, but all students with learning disabilities and AD/HD should be given the necessary tools for success, both in college and in life. - Salle from Colorado To learn more about the LEAD program, visit www.leadcolorado.org. IDEA Parent Guide • National Center for Learning Disabilities • www.LD.org Transition • 52 9 Who is this for?

  Parental Engagement in Community‐Based Rehabilitation: Boosting Daily Functioning for Individuals With Intellectual Disabilities in Malaysia · 2026 · DOI

• Setting Goals and Planning for the Transition to College My son, Sal, is a high school senior just outside of New York City. He was first identified at the age of four as a child with a significant language disorder, and then later, as a student with a learning disability and a stuttering disorder. A large part of his current success is related to transition planning, which has helped him gain the academic, emotional and social skills necessary for attaining his goals. I believe that setting goals for the future should start whenever a child with learning disabilities first communicates his or her frustrations, disappointments and helplessness in school. For us, that moment occurred when Sal was in the third grade. As we were outside enjoying the sunshine, he turned to me and said that he hated his brain because it didn’t do what he wanted it to do. That began a very open and honest conversation about learning differences. I reassured him that he would find, with the help of the school, his family and all those that loved him, different ways to learn and succeed. From that day forward, we;ve had frequent conversations about his learning differences. I have involved Sal in all aspects of his education. In the seventh grade, I invited him to attend his first Annual Review and sit as a member of the Committee on Special Education, designated by New York State. This multidisciplinary team determines a student’s abilities and needs and implements an appropriate IEP for eligible students. This first meeting for Sal served as a confirmation that he did have a learning disability. Attending subsequent meetings allowed him to see how the system worked, find out who was on his “team” and learn how the committee decided on his specific IEP and accommodations. By the time he was in the tenth grade, Sal not only embraced and “owned” his learning disability, he demonstrated confidence and self-assuredness in his ability to request needed support. He understood the process. Over the years, Sal has benefited from a number of accommodations and program modifications. In ninth grade, his resource room teacher noticed that he performed better if test questions were read to him and/or rephrased. Double time ensured even better success. These and other testing accommodations made a tremendous difference in the ensuing school years. Preparing for the SATs was a big challenge. Although we enrolled Sal in a well-recognized preparatory course, our request for testing accommodations was a first for them. They could not accommodate double time, but they did accommodate time and a half. For six weeks, he took practice SATs with accommodations. When necessary, questions were read out loud to him. With the help of his school guidance counselor, Sal applied for testing accommodations for the real SAT according to The College Board requirements. The College Board allowed him to take the test over two days. He tested by himself and, when necessary, questions were read to him. He took the SATs twice. Sal’s efforts to achieve an acceptable score were tremendous. Passing the English regents exam for graduation was no easy task either. Sal spent additional time working with his English and resource room teacher to prepare. Then one day, he called me from school, almost in tears. He had received a passing score of 80! During our transition planning, Sal learned to own his learning disability, to embrace it, to not be embarrassed of it, to succeed in spite of it and to feel special. And now, this spring, Sal will be graduating from high school with an advanced regents diploma. For this distinction, he had to take a more comprehensive course load and pass eight regents exams. In the fall, Sal will be attending college and playing football on the school team. Here is how he concluded his college essay: “Special education has actually taught me to think out of the box, to go beyond the conventional way of learning, and to find my strengths. To my peers but more importantly to myself, I have proven that I have the ability to overcome challenges. Special education should not be a limitation; it is a jumping point to an endless world of life’s lessons.

  Parental Engagement in Community‐Based Rehabilitation: Boosting Daily Functioning for Individuals With Intellectual Disabilities in Malaysia · 2026 · DOI

• Tips for School Meetings I am the father of two special needs children. My older child has a smorgasbord of attributes that interfere with learning, including emotional, behavioral and specific learning disabilities. I have specially designed armor I wear when attending any school meeting for him. I am also an educational advocate for foster children, attending intervention meetings almost daily. Over the years, I have learned much about the way schools operate, and how different each school’s attitude is regarding educating atypical learners. They all talk a great game (as required by law), but some are better at practicing what they preach. Schools are under-funded, over-crowded, and over-burdened with changing rules, cryptic regulations and mountains of paperwork. I try to accomplish what I need with honey-coated negotiating skills. However, if I have to turn into PAPA-BEAR to get what my child needs – so be it. I never forget – I am an equal-say partner at any meeting and the only one sitting around the table who tucks my child in at night. When I first began protesting that one of my son’s needs was not being addressed, I was amazed when the educators turned to me and asked, “So, what would you suggest?” I quickly learned to have suggested interventions ready and know what the laws stipulate. I also learned to ask the educators sitting around the table to help think of non-traditional interventions. I respectfully point out that they are the ones with the training, education and years of experience. Conversely, I never blindly accept what is told to me without questioning and understanding the implications and ramifications. If I have to stop a meeting for clarification one or ten times – so be it. Take notes during the meeting. Often people change, revise or deny what they have said earlier. If you’ve written it down, you can refer back to what is being said during and after the meeting. Don’t count on the official note-taker. If I want to make a point or if I have an un-addressed need, I state that I want this reflected in the notes. Also, have the notes read aloud at the end of the meeting. Make sure you agree with what they state has transpired, and get a copy of everything. Keep it in a file that you bring to any follow-up meetings. Discover what frustrates your child at school by asking him/her directly, and address these in the school meeting. Ask specific (not general) questions, such as, “Is it hard for you to finish when the teacher asks you to copy information from the board onto your paper?” “How do you feel during a test? Are you able to finish with no problem?” “How noisy is your class?” “What is your favorite subject?” You may be surprised by some of the answers. Remember, you are a vital part of the decision-making committee. Don’t be intimidated by educators who want to “tell” you what will be done or say, “We can always make changes later.” It’s easier to get it done right the first time. Don’t let them rush through an IEP meeting because another one has been scheduled. This is a one-year contract you are signing and it deserves the time and consideration needed for you to understand and agree with what is in writing.

  Parental Engagement in Community‐Based Rehabilitation: Boosting Daily Functioning for Individuals With Intellectual Disabilities in Malaysia · 2026 · DOI

• Why My Son Attended His Own IEP Meetings My son Jay was identified with multiple learning disabilities when he was just a toddler. When he was admitted to a school in New York for special education students, no one knew whether he could ever learn to read. I do not know where in his soul he found the drive and motivation, but he learned to do what many people said could not be done – he learned to read at age nine. Jay’s school was filled with specialists who custom tailored his classes to meet his special needs. But then came the greater challenge. Could he learn subjects such as history, literature, and foreign languages in a regular classroom? When Jay arrived in a regular middle school, he had compensation strategies thanks to successful early intervention. But his new regular classroom teachers did not know about strategies that would be appropriate for him. They were untrained and unaccustomed to his special needs. Jay’s accommodations were written into his IEP, but the school staff and district administrators refused to read them. So, it was perhaps not surprising that they discouraged Jay from attending his own IEP meetings. Administrators told Jay that he needed to work harder in class and needed the meeting time for coursework. And they told me that he would be traumatized by the reports about himself from the IEP team. As his parent, I felt that Jay needed to attend every IEP meeting. If he was going to understand what was happening in his education, he had to be part of the process. I couldn’t imagine a successful IEP without his buy-in. He had a far better understanding of what was really going on because he was in the classroom. At one of his IEP meetings, the staff asserted that Jay had made so much progress that he no longer needed an IEP, and that he should be found ineligible for special education services. They were basing this partly on a recent 6th grade standardized test score. There wasn’t much logic to their argument. The staff asserted that Jay got 100% on a recent spelling test. This was important because we had heated controversy about whether Jay’s IEP should require un-graded spelling due to his learning disability. The staff argued that Jay should be graded on his spelling in light of his remarkably high reading comprehension score on the recent standardized test – even though the score was inconsistent with Jay’s history and with other recent scores. Then, quite unexpectedly, my son spoke up. He softly explained that the 100% was actually ten words on a quiz that was a make-up – hardly a breakthrough score. This was also inconsistent with his personal educational history. More importantly, he then explained why his reading comprehension score on the standardized test was so high. Jay said that he never actually read the paragraphs that were included with the test! Never read the paragraphs? Well, the paragraphs were about the terracotta warriors in X’ian China. Coincidentally, we had toured these same warriors in person, five years earlier. The paragraphs were too long to bother with, Jay explained, so when he realized they were asking about the warriors he had already seen, he just answered the questions based on his prior knowledge. So, Jay spent his entire time (including his extended time) answering the multiple-choice questions. He reported they were easy questions: What were the warriors used for? (For defense) Were they alive? (No, they were in a tomb) What was special about them? (No two are alike). Jay knew most of the answers, guessed the rest, and voila – high score! If Jay had not been at that meeting, the school would have used those two test scores to end his special education services. By speaking up, my son set the record straight and saved his own eligibility.

  Parental Engagement in Community‐Based Rehabilitation: Boosting Daily Functioning for Individuals With Intellectual Disabilities in Malaysia · 2026 · DOI

• Those Three Words: Prior Written Notice My name is Alex, and I am the father of twin second graders, Holly and Josh, who attend elementary school in Delaware. Holly and Josh were born 12 weeks premature. Their pre-maturity resulted in both children having hydrocephalous as well as various learning disabilities. I have participated in IEP meetings for five years starting when Holly and Josh were three years old. At each IEP meeting I was given a small booklet that described a parent’s procedural safeguards under IDEA. To be honest, I never actually read through it. I always trusted school staff and assumed that the teachers and therapists would do all they could to meet my children’s specific needs. The district staff never took the time to go over the procedural safeguards document with me and I never realized exactly how important knowing your rights could be. Then, at my last IEP meeting, I was told that my daughter Holly had only made one month of progress in reading during the previous twelve months time and that she was falling farther and farther behind. During her IEP meeting I asked for some additional intervention from the school reading specialist, but was told the reading specialist was already seeing too many children and did not have any additional time available to spend with my daughter. The school staff told me that Holly would just have to make due with the small group instruction she was getting in the special ed classroom. I really didn’t know what to say. Luckily I talked to other parents and they recommended that I attend a seminar sponsored by our district’s special needs PTA. A representative from our state’s Parent Information Center was there as well as two attorneys who explained, step by step, all of the parent rights described in that little book that I had previously never read. It was there that I learned the three most important words that a parent of a child with disabilities needs to know: “Prior Written Notice.” I had heard district staff use this term once in a while, and thought that it only meant that the district had to give you 10 days notice before scheduling an IEP meeting. It actually means a whole lot more. At the special needs PTA meeting I learned that Prior Written Notice means that when a school district adds, changes, or denies educational services to your child, they must explain to the parent in writing why the services are being added, changed, or denied. If the school district is denying your services, they most likely will not provide you prior written notice voluntarily – you will have to ask them to do it. I have found that my state’s Parent Training and Information Center and our District’s Special Needs PTA can be extremely valuable resources. In my situation, the school district took our concerns more seriously when we requested them to give us Prior Written Notice concerning why my request for time with the reading specialist was being denied. The district ended up re-evaluating her reading skills and assigned a reading specialist to coach her teacher on how to better teach to my daughter. It’s not exactly what I wanted, but it’s a start. I’m hopeful that the district will agree with me and get my daughter the additional help she needs. In the meantime, we are using a private tutoring service to supplement her instruction. I’m sure my story isn’t all that unique but I can’t emphasize enough how important it is to know your rights under IDEA – especially those three words: Prior Written Notice. They can make some powerful things happen for you that might change the outcome for your child. Hang in there – you are not alone.

  Parental Engagement in Community‐Based Rehabilitation: Boosting Daily Functioning for Individuals With Intellectual Disabilities in Malaysia · 2026 · DOI

• Success is Sweet: A Story of Parent Advocacy Our district is in Southwest Colorado, and one of the early things I learned was to find as many parents of dyslexic children as I could, and compare notes. Some of us had successful Individual Education Programs (IEPs) for our children, and we would meet at my office on the weekend to read them, laugh, weep, and write down the aspects that were successful and suitable for our own children. For Goals and Objectives, we read “Better IEPs” by Barbara D. Bateman and soon realized that we were actually teaching the school district. As we became more successful in writing IEPs, we realized the district would never be able to provide a Free Appropriate Public Education to our dyslexic children under the current conditions. We had 12th grade students with 4th or 5th grade reading abilities and in my opinion our Colorado Student Assessment Program (CSAP) results were appalling. One summer we raised over $23,000 to provide cash funds to dyslexic students who wished to attend a six-week academic dyslexic summer camp. Some parents chose to provide their children with one-on-one tutoring by a private Certified Academic Language Therapist. My son was able to go from a 4.6 grade reading level to an 11th grade reading level in 18 months! How? He received a “scientifically proven method” of teaching by a highly qualified therapist. Consequently, when he reached 9th grade, he was able to access the district curriculum set before him. He also passed his Reading and Writing CSAPs for the first time in 5 years. We worked with our local newspaper, each of us writing letters to the editor on a continuing basis, never letting the subject of dyslexia and our children’s needs drop out of the public eye. Now, the newspaper writes their own editorials in support of our dyslexic children’s needs. We attend school board meetings monthly, and pluck up the courage to tell our story. For some, it is an emotional three minutes of talking; for others, they take it in stride and speak strongly and positively on behalf of all our children. We learned from Peter and Pam Wright (www.wrightslaw.com) how to become better advocates for our children. We received their monthly newsletters and purchased their books, “From Emotions to Advocacy” and “Special Education Law.” We subscribe to every national web site with information that we can. We have an e-mail “tree” of parents who stick together. We support each other emotionally. We attend the International Dyslexia Association Conference and the Southwest IDA Conference too. We persuade our Director of Special Education and our respective school principals to send their teachers. Knowledge is power. We encouraged our local Representative in the House of Colorado to change state law, and he included the word “dyslexia” as a “specific learning disability.” The Colorado State Senate Bill SB06-118 was signed off by the Senate President and House Speaker and forwarded to Governor Bill Owens for his signature on March 31, 2006. As a result, the district will soon have to provide a “scientifically proven method of teaching” to our dyslexic children. All in all, despite the hardship, trauma and effort, we feel we are being successful. Our campaign won’t help our children, but we knew that in 4th grade when we began. The good news is that if we continue, we will eventually make a difference in the lives of a future generation of children, and our activism will one day allow those children to check out of 12th grade with 12th grade reading. Success is sweet – and we decided long ago that it didn’t matter to whom the success came.

  Parental Engagement in Community‐Based Rehabilitation: Boosting Daily Functioning for Individuals With Intellectual Disabilities in Malaysia · 2026 · DOI

• Twenty Years Later What have I learned after weaving my way through the special education maze? Knowledge is power – you must be as informed as possible about your child’s disability AND your child’s strengths. You must know the law and how to use it. You must have good communication skills. You must believe in yourself. You must believe in your child. You must be creative. You must be patient. You must be part of a team. You will play many roles, not just mother or father but also Cheerleader, Advocate, Tutor, Lawyer, Researcher, Detective, Teacher, Mediator, Psychologist and Student. Yes, you are the Student and your child is the Teacher. Your child provides the opportunity for growth not just for you as a parent but also for the teachers. Your child provides the opportunity for your school to grow and expand its vision. Your child says: “Look at me, I am different, I am truly an individual, you must change the way you’ve been doing things, you must get creative, you must try something new.” You will at first cry, you will be frustrated, you will feel overwhelmed, you will feel alone, you will fight. There will be times you feel like giving up, but you won’t because you love your child too much. You will make a conscious decision to be part of the solution. You will make a plan.

  Parental Engagement in Community‐Based Rehabilitation: Boosting Daily Functioning for Individuals With Intellectual Disabilities in Malaysia · 2026 · DOI

• Several limitations of this study should be ac- knowledged. First, the use of self-report measures may have influenced the results, as subjective as- sessments can differ from objective indicators of health. In addition, the cross-sectional design lim- its the possibility of drawing causal conclusions. 54 Sanja Skočić Mihić, Nataša Vlah, Tamara Rogović: Self-assessment of the psychophysical health of parents of children with autism... Second, the sample was predominantly composed of mothers, with only a small number of fathers participating in the study. Although mothers are more frequently the primary caregivers, future research should aim to include a greater number of fathers in order to obtain a more comprehen- sive understanding of parental experiences and psychophysical health. Third, although variability in subjective health assessments was observed, it was not explained by the examined sociodemo- graphic variables. Future studies should, there- fore, explore additional factors that may account for these differences, such as coping strategies, so- cial support, and individual psychological charac- teristics. Fourth, the absence of data on the child’s sex and age may have constrained the precision of the findings’ interpretation; accordingly, future studies should incorporate these variables to facil- itate a more nuanced and comprehensive analysis. Future research should also consider the role of coping strategies and personal resources in shaping caregivers’ wellbeing. Previous research has shown that adaptive coping strategies, such as seeking social support and professional help, are associated with better quality of life, where- as maladaptive strategies may contribute to in- creased emotional burden (Sánchez-Amate & de la Rosa, 2024). Finally, future research should consider com- bining subjective assessments with objective health indicators (e.g., physiological measures of stress), as well as applying longitudinal designs to better understand changes in psychophysical health over time. CONCLUSION The findings of the present study indicate that parents of children with ASD experience reduced wellbeing, particularly in psychosocial domains, including emotional functioning, energy levels, and everyday social participation, while physical functioning appears relatively less affected. When compared to earlier Croatian findings using the same instrument, the results suggest that psycho- social wellbeing in this population has not im- proved and may be even lower in some domains.

  Self-assessment of the psychophysical health of parents of children with autism spectrum disorder · 2026 · DOI

• Future research may explore other ways to support self-advocacy of young children, as it cannot be expected that all young children will engage in self-advocacy without instruction and supports to maintain skills (Shogren et al. , teachers, parents and caregivers, other invested partners), as this area of the literature remains under-explored (Malone et al.

  Self-Advocacy and Social Problem-Solving Intervention for Preschoolers with Social and Behavioral Support Needs · 2026 · DOI

• While findings indicate promising positive outcomes for relatively low-effort SPS instruction, these data should be consumed in light of limitations of this study.

  Self-Advocacy and Social Problem-Solving Intervention for Preschoolers with Social and Behavioral Support Needs · 2026 · DOI

• The professional development opportunities should be provided to mainstream school teachers. It should be focused on modification of classroom environments, inclusive approaches to classroom learning, and learning of real-world information about the autism spectrum disorder. Parents must also be grouped into regular training programs to improve their knowledge of the ASD, behavior management techniques, and the use of visual and sensory supports within their homes. It demands organized communication networks, such as weekly plans and joint progress notes, to guarantee uniformity between school and home practice. In addition to increasing inclusive infrastructure and assistive technologies, policymakers should consider adding ASD-oriented courses to teacher education programs. REFERENCES American Psychiatric Association. (2022). Diagnostic and statistical manual of mental disorders (5th Ed., Text Rev.). https://doi.org/10.1176/appi.books.9780890425787. Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3 (2), 77-101. https://doi.org/10.1191/1478088706qp063oa. Carrera, M., Alvarez, A., & Ruiz, J. (2023). Building the inclusive practices through parental collaboration in autism education. International Journal of Special Education, 38 (4), 561– 574. Cervera, P., Andrés, M., & Cerezuela, G. (2018). The effectiveness of TEACCH intervention in autism spectrum disorder: A review study. Papeles Del Psicólogo, 39: 40-50. Creswell, J. W., & Creswell, J. D. (2023). Research design: Qualitative, quantitative, and mixed methods approach (6th ed.). Sage. Feghang, M. M. D. (2025). The teachers’ awareness and stigma reduction in autism education across the developing countries. The Journal of Educational Research in Psychology, 11 (3), 210– 229. Gao, X., & Drani, S. (2024). Parent-implemented interventions in Chinese families of children with autism spectrum disorder. Humanities & Social Sciences Communications, 11, 196. https:// doi.org/10.1057/s41599-024-02710-5. Hajri, M., Abbes, Z., & Yahia, H. (2022). Cognitive deficits in children with autism spectrum disorders: Toward an integrative approach combining the social and non-social cognition. Frontiers in Psychiatry; 13: 917121. Journal of Social Sciences Development, Volume 05, Issue 01, MARCH, 2026 109 Shoqat & Munir … Experiences Of Teachers Hebel, O. & Persitz, S. (2014). Parental involvement in the individual educational program for Israeli students with disabilities. The International Journal of Special Education, 29 (3), 58- 68. Hornby, G. (2011). Parental involvement in childhood education: Building effective school family partnerships. Springer. Hosseinpour, Z., Fatima, N., & Bibi, S. (2024). Parental experiences and teacher readiness in inclusive Pakistani schools.

  EXPERIENCES OF TEACHERS AND PARENTS IN A TEACCH-BASED SUPPORT PROGRAM FOR CHILDREN WITH AUTISM SPECTRUM DISORDER · 2026 · DOI

• Future research should examine whether the cycle–divergence adaptation model While the study traces parental adaptation across different stages through retrospective interviews and observation, it is a cross-sectional study and cannot capture long-term longitudinal changes in resilience and adaptation. Future research should explore how parental resilience influences child outcomes and how child outcomes, in turn, shape parental resilience—an important direction for family-centered positive psychology interventions.

  Unyielding hearts: parental adaptation and resilience among families of children with autism in China · 2026 · DOI

• Currently, little is known about the extent to which families from low socio-economic status (SES) backgrounds would be interested in or have access to CBME programs.

  Parental insights into the benefits and feasibility of community-based music enrichment programs for children in economically disadvantaged areas · 2026 · DOI

• Future research should focus on standardising outcome measures, exploring peer-led interventions, and conducting larger studies in diverse global contexts to promote more inclusive and equitable societies for families affected by ID.

  Support Programmes for Parents of Children with Intellectual Disabilities: A Scoping Review · 2026 · DOI

• BACKGROUND: Lived experience accounts highlight that challenges in interactions with healthcare professionals can reduce birth satisfaction and contribute to traumatic experiences, revealing significant gaps in current perinatal care for this population; yet few studies have explored the experiences of healthcare workers providing this care in Australia.

  Understanding healthcare professionals’ experiences supporting Autistic people in perinatal care: A qualitative study · 2026 · DOI

• With more than 400,000 children are in foster care in the United States, and approximately 39,000–57,000 residing in group homes, limited research has explored why rehabilitation efforts in these settings often fall short.

  Gaps in Therapeutic Services for Foster Youth in Short Term Residential Therapeutic Programs · 2026

• warrant explicit independent determinant of social-interaction acknowledgement. First, the cross-sectional design quality argues for embedding caregiver-network precludes causal inference; the observed functions within the core architecture of pediatric associations are compatible with reverse and ASD pathways rather than treating them as bidirectional pathways, and longitudinal designs adjunctive activities. Concrete structural elements are required to establish directionality. Second, the include: (i) formal designation of trained caregivermodest sample size (n = 36) limits multivariable peer navigators within each special-needs school precision; while the model converged with and pediatric developmental-behavioral clinic; (ii) acceptable fit, the adjusted OR confidence interval scheduled monthly parent-support meetings cofor network/social support remained wide, and the facilitated by pediatricians, school counselors, and sex-stratified estimate for girls (n = 3) is imprecise. trained parent-peers; (iii) intentional linkage to In particular, with only 9 low-quality outcome faith- and community-based networks that events and 7 predictors entered into the constitute the dominant social fabric of Indonesian multivariable logistic-regression model, the eventsfamilies, with culturally adapted curricula; and (iv) per-variable (EPV) ratio was approximately 1.3, far inclusion of a brief composite family-support score below the conventional minimum of 10; the in routine pediatric ASD follow-up visits, using the adjusted estimates should therefore be interpreted empirical cut-off identified in Figure 3 as an with caution, and the logistic regression is best actionable threshold for triggering additional regarded as exploratory rather than confirmatory. psychosocial-support referrals.

  Family Support Domains and Quality of Social Interaction in School-Aged Children with Autism Spectrum Disorder: A Cross-Sectional Study in Palembang, Indonesia · 2026 · DOI

Most-cited papers in Family and Disability Support Research

• The Health and Well-Being of Caregivers of Children With Cerebral Palsy · PEDIATRICS · 2005 · 814 citations
• Stress Levels and Adaptability in Parents of Toddlers with and without Autism Spectrum Disorders · Research and Practice for Persons with Severe Disabilities · 2005 · 349 citations
• Family-centered caregiving and well-being of parents of children with disabilities:linking process with outcome · Journal of Pediatric Psychology · 1999 · 344 citations
• Evidence of resilience in families of children with autism · Journal of Intellectual Disability Research · 2007 · 332 citations
• Are Fathers Involved in Pediatric Psychology Research and Treatment? · Journal of Pediatric Psychology · 2005 · 329 citations
• A Review of the Evidence for the Medical Home for Children With Special Health Care Needs · PEDIATRICS · 2008 · 295 citations
• Health Outcomes of Parents of Children with Chronic Illness: A Systematic Review and Meta-Analysis · The Journal of Pediatrics · 2020 · 289 citations
• Child Care and Low-Income Children's Development: Direct and Moderated Effects · Child Development · 2004 · 256 citations
• The Association Between Emotional and Behavioral Problems in Children with Autism Spectrum Disorder and Psychological Distress in Their Parents: A Systematic Review and Meta-analysis · Journal of Autism and Developmental Disorders · 2018 · 247 citations
• Parents' Ratings of the Acceptability of Behavioral Treatment Recommendations Made in an Outpatient Clinic: A Preliminary Analysis of the Influence of Treatment Effectiveness · Behavioral Disorders · 1988 · 220 citations

Most recent work

• Individual Profound Autism Criteria and Unmet Needs Among Autistic Adolescents and Their Caregivers · JAMA Pediatrics · 2026
• Adaptation and Multi-Methods Validation of the Cultural Self-Efficacy Scale in Early Intervention (CSES-EI) · Exceptional Children · 2026
• We need our own movement: Embracing cultural humility to reframe Western perspectives of autism for global contexts · School Psychology International · 2026
• Housing stability for disabled parents in the United States: estimates from the American Community Survey · Housing and Society · 2026
• Early Intervention Stakeholder Perspectives of Family-Centered Care Coordination: A Pilot Study · Topics in Early Childhood Special Education · 2026
• Implementing skills-based treatment in naturalistic contexts · Tizard Learning Disability Review · 2026
• Positive behaviour support for self-injurious behaviour in an adolescent with multiple complex needs: a case study · Tizard Learning Disability Review · 2026
• Needs, Challenges, Burdens and Interventions for Informal Caregivers of Adults with Autism Spectrum Disorders (ASD): A Scoping Review · Review Journal of Autism and Developmental Disorders · 2026
• Parent Mental Health and Engagement in Parenting Interventions for Child ADHD · Research on Child and Adolescent Psychopathology · 2026
• The Efficacy of Acceptance and Commitment Therapy for Reducing Anxiety in Parents of Children With Special Needs: A Meta-Analysis · Research on Child and Adolescent Psychopathology · 2026

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