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Odds of having a child with autism. Understanding Autism Risk Factors: Age, Genetics, and Testing Options

What are the odds of having a child with autism. How do parental age and genetics influence autism risk. Which genetic tests are available for autism risk assessment. How can families reduce their risk of having a child with autism.

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The Impact of Parental Age on Autism Risk

Autism Spectrum Disorder (ASD) affects approximately 1 in 36 children in the United States, according to the Centers for Disease Control and Prevention (CDC). Research has shown that parental age plays a significant role in determining the risk of having a child with autism.

A study published in JAMA Pediatrics revealed that:

  • The risk of having a child with autism increases by about 18% for every five-year increase in the mother’s age at the time of birth.
  • The risk increases by about 21% for every five-year increase in the father’s age at the time of conception.

Despite these statistics, it’s crucial to note that the majority of children with autism are born to parents under the age of 35. Most children with ASD are diagnosed by age four, suggesting that the disorder likely originates during early brain development.

Overall Prevalence and Risk Factors for Autism

While the odds of having a child with autism may increase with parental age, it’s important to understand that the overall prevalence remains relatively low. The CDC reports that approximately 1 in 54 children in the United States has autism, which translates to less than a 2% chance of having a child with ASD.

Are there ways to reduce the risk of having a child with autism? While there’s no guaranteed prevention, some steps that may help include:

  1. Maintaining a healthy lifestyle before and during pregnancy
  2. Seeking genetic counseling if there’s a family history of the disorder
  3. Being aware of early signs of autism to seek early intervention if necessary

The Genetic Component of Autism Spectrum Disorder

Genetics plays a significant role in the development of autism, although the exact cause remains unknown. Research has provided valuable insights into the genetic factors associated with ASD:

  • Studies on identical twins have shown that if one twin has autism, there’s up to a 90% chance that the other twin will also have it, indicating a strong genetic component.
  • Multiple genes are likely involved in the development of autism, and ongoing research aims to better understand these genetic factors.
  • Some studies have identified specific genes that may increase the risk of developing autism, while others suggest certain gene mutations may play a role.

Can genetics alone explain all cases of autism? No, environmental factors such as exposure to toxins or infections during pregnancy may also contribute to its development. Understanding the role of genetics in autism can help researchers develop more effective treatments and interventions for individuals with the disorder.

Genetic Testing Options for Autism Risk Assessment

For families concerned about their risk of having a child with autism, several genetic testing options are available. These tests can help identify potential risk factors and provide information about the likelihood of having a child with ASD.

Chromosomal Microarray Analysis (CMA)

CMA is a type of genetic test that examines changes in the number or structure of chromosomes. How is CMA performed?

  • Typically done using a blood sample
  • Can be performed prenatally or after birth
  • Helps identify chromosomal changes associated with an increased risk of autism and other developmental disorders

Whole-Exome Sequencing (WES)

WES focuses on the exome, which contains instructions for making proteins. What does WES reveal?

  • Identifies specific gene mutations that may increase the risk of developing autism
  • Provides a comprehensive analysis of protein-coding regions in the genome
  • May not provide answers for all cases, as not all autism is caused by gene mutations

Targeted Gene Sequencing (TGS)

TGS concentrates on specific genes linked to autism. How does TGS differ from other genetic tests?

  • Focuses on a select set of genes associated with autism risk
  • Can identify mutations in these specific genes
  • May be more cost-effective than whole-exome sequencing for some families

It’s important to note that while genetic testing can provide valuable information about autism risk, it does not guarantee a diagnosis. Some families may choose not to undergo genetic testing for personal or ethical reasons.

Environmental Factors and Their Influence on Autism Risk

While genetics play a significant role in autism development, environmental factors also contribute to the overall risk. Understanding these factors can help families make informed decisions and potentially reduce their risk of having a child with autism.

Which environmental factors have been associated with an increased risk of autism?

  • Advanced parental age (as discussed earlier)
  • Maternal infections during pregnancy
  • Exposure to certain medications during pregnancy (e.g., valproic acid)
  • Prenatal exposure to air pollution
  • Complications during pregnancy or childbirth
  • Extreme prematurity or very low birth weight

It’s important to note that the presence of these factors doesn’t guarantee that a child will develop autism. Conversely, the absence of these factors doesn’t ensure that a child won’t develop ASD. The interplay between genetic predisposition and environmental influences is complex and not fully understood.

Early Signs and Diagnosis of Autism Spectrum Disorder

Early diagnosis and intervention can significantly improve outcomes for children with autism. Recognizing the early signs of ASD is crucial for parents and caregivers.

What are some common early signs of autism in young children?

  • Limited or no eye contact
  • Lack of response to name by 12 months
  • Delayed language development
  • Repetitive behaviors or movements
  • Unusual reactions to sensory input (e.g., sounds, textures, lights)
  • Difficulty with social interactions and communication
  • Intense focus on specific objects or topics

If parents notice these signs, they should consult with their pediatrician or a developmental specialist for a comprehensive evaluation. Early diagnosis can lead to early intervention, which may include behavioral therapies, educational support, and other specialized services tailored to the child’s needs.

Advances in Autism Research and Future Prospects

The field of autism research is rapidly evolving, with new discoveries and advancements being made regularly. These developments offer hope for improved understanding, diagnosis, and treatment of autism spectrum disorder.

What are some recent advances in autism research?

  • Identification of new genes associated with autism risk
  • Development of more precise diagnostic tools and techniques
  • Exploration of potential biomarkers for early detection
  • Investigation of novel therapeutic approaches, including targeted medications and behavioral interventions
  • Improved understanding of the neurobiological basis of autism
  • Research into the long-term outcomes and needs of adults with autism

These advancements provide hope for more effective interventions and support for individuals with autism and their families. As research progresses, we may see more personalized approaches to autism treatment based on an individual’s genetic and environmental risk factors.

Support and Resources for Families Affected by Autism

For families who have a child with autism or are concerned about their risk, numerous support systems and resources are available. These can provide valuable information, guidance, and assistance throughout the autism journey.

Where can families find support and resources related to autism?

  • Autism advocacy organizations (e.g., Autism Speaks, Autism Society of America)
  • Local support groups for parents and caregivers
  • Early intervention programs and specialized educational services
  • Online forums and communities for sharing experiences and advice
  • Professional counseling and therapy services
  • Respite care programs for caregivers
  • Financial assistance programs for autism-related expenses

These resources can provide emotional support, practical advice, and access to services that can greatly benefit families affected by autism. It’s important for families to remember that they are not alone in their journey and that help is available.

The Role of Healthcare Providers in Autism Risk Assessment and Management

Healthcare providers play a crucial role in assessing autism risk, diagnosing ASD, and managing care for individuals with autism. Pediatricians, developmental specialists, geneticists, and other healthcare professionals work together to provide comprehensive care and support.

How do healthcare providers contribute to autism care and management?

  • Conducting developmental screenings and assessments
  • Providing genetic counseling and testing when appropriate
  • Coordinating referrals to specialists and intervention services
  • Monitoring developmental progress and adjusting treatment plans
  • Educating families about autism and available resources
  • Addressing co-occurring medical conditions often associated with autism

Regular check-ups and open communication with healthcare providers are essential for families concerned about autism risk or managing an autism diagnosis. These professionals can offer valuable guidance and support throughout the autism journey.

The Importance of Inclusive Education and Community Support

Creating inclusive environments for individuals with autism is crucial for their development and overall well-being. Educational institutions and communities play a vital role in supporting individuals with ASD and their families.

How can schools and communities promote inclusivity for individuals with autism?

  • Implementing inclusive education practices in schools
  • Providing specialized support services within mainstream educational settings
  • Offering autism awareness training for teachers, staff, and students
  • Creating sensory-friendly spaces in public areas
  • Developing employment programs for adults with autism
  • Promoting community events and activities that are inclusive of individuals with ASD
  • Encouraging peer support and mentoring programs

By fostering understanding and acceptance, communities can create environments where individuals with autism can thrive and reach their full potential.

The Economic Impact of Autism and Available Support

Autism can have significant financial implications for families and society as a whole. Understanding the economic impact and available support can help families better prepare and advocate for necessary resources.

What are the economic considerations related to autism?

  • Costs associated with medical care, therapies, and specialized education
  • Potential loss of income due to caregiving responsibilities
  • Long-term financial planning for individuals with autism
  • Societal costs related to autism support and services

Fortunately, various forms of financial assistance and support are available for families affected by autism:

  • Insurance coverage for autism-related treatments and therapies
  • Government programs such as Medicaid and Supplemental Security Income (SSI)
  • Special needs trusts and ABLE accounts for long-term financial planning
  • Non-profit organizations offering grants and financial assistance
  • Tax deductions and credits for medical expenses and special education costs

Families should explore these options and consult with financial advisors experienced in special needs planning to ensure they’re utilizing all available resources.

The Role of Technology in Autism Support and Intervention

Advancements in technology have opened up new possibilities for supporting individuals with autism and their families. From assistive communication devices to educational apps, technology plays an increasingly important role in autism intervention and management.

How is technology being used to support individuals with autism?

  • Augmentative and alternative communication (AAC) devices and apps
  • Virtual reality tools for social skills training
  • Educational software tailored to individual learning needs
  • Wearable devices for monitoring and managing anxiety or sensory overload
  • Telehealth platforms for remote therapy and consultations
  • Smart home technologies for promoting independence
  • Social networking apps designed for individuals with autism

These technological solutions can enhance communication, learning, and independence for individuals with autism, while also providing valuable tools for parents, caregivers, and educators.

The Importance of Self-Advocacy and Autism Acceptance

As awareness of autism grows, there’s an increasing focus on the importance of self-advocacy and promoting autism acceptance. This shift in perspective emphasizes the unique strengths and abilities of individuals with autism, rather than viewing ASD solely as a disorder to be treated.

How can society promote autism acceptance and support self-advocacy?

  • Listening to and amplifying the voices of individuals with autism
  • Challenging stereotypes and misconceptions about autism
  • Promoting neurodiversity in workplaces and educational settings
  • Supporting autism-led organizations and initiatives
  • Encouraging individuals with autism to participate in decision-making processes that affect their lives
  • Providing platforms for individuals with autism to share their experiences and perspectives
  • Celebrating the unique strengths and contributions of individuals with autism

By fostering a culture of acceptance and empowerment, we can create a more inclusive society that values the diverse perspectives and abilities of all individuals, including those on the autism spectrum.

The Global Perspective on Autism: Challenges and Opportunities

Autism is a global phenomenon, affecting individuals and families across cultures and continents. However, awareness, diagnosis rates, and available support can vary significantly between countries and regions.

What are some global challenges and opportunities related to autism?

  • Disparities in autism awareness and understanding across different cultures
  • Variations in diagnostic criteria and practices between countries
  • Differences in healthcare systems and access to autism-related services
  • Cultural stigma and misconceptions about autism in some regions
  • Opportunities for international collaboration in autism research
  • Potential for global awareness campaigns to improve understanding and acceptance
  • Challenges in providing culturally sensitive and appropriate interventions

Addressing these global challenges requires international cooperation, cultural sensitivity, and a commitment to sharing knowledge and resources. By working together, the global community can improve outcomes for individuals with autism worldwide.

The Evolution of Autism Understanding: From Past to Present

Our understanding of autism has evolved significantly since it was first described in the 1940s. This evolution has led to changes in diagnostic criteria, treatment approaches, and societal perceptions of autism.

How has our understanding of autism changed over time?

  • Shift from viewing autism as a rare condition to recognizing it as a spectrum disorder
  • Moving away from psychogenic theories to recognizing the neurobiological basis of autism
  • Increased recognition of the genetic components of autism
  • Evolution of diagnostic criteria to better capture the diverse presentations of ASD
  • Shift from institutionalization to community-based support and inclusion
  • Growing emphasis on early intervention and individualized support
  • Increased focus on lifespan issues and support for adults with autism

This evolving understanding has led to more accurate diagnoses, improved interventions, and greater acceptance of neurodiversity. As research continues, our knowledge of autism will likely continue to grow and change, potentially leading to even more effective support strategies in the future.

Odds Of Having A Child With Autism By Age

Odds Of Having A Child With Autism By Age

Autism Spectrum Disorder (ASD) is a complex developmental disorder that affects communication, social interaction, and behavior. According to the Centers for Disease Control and Prevention (CDC), approximately 1 in 36 children in the United States has been diagnosed with ASD.

As a parent, you may wonder what the odds are of having a child with autism, and how these odds change with age. In this article, we will explore the odds of having a child with autism by age.

The odds of having a child with autism generally increase with the age of the mother and father. According to a study published in JAMA Pediatrics, the risk of having a child with autism increases by about 18% for every five-year increase in the mother’s age at the time of birth.

The same study found that the risk of having a child with autism increases by about 21% for every five-year increase in the father’s age at the time of conception.

However, it’s important to note that the majority of children with autism are born to parents who are under the age of 35. In fact, most children with autism are diagnosed by the age of four, indicating that the disorder likely has its roots in early brain development.

It’s also important to understand that while the odds of having a child with autism may increase with age, they are still relatively low overall.

According to the CDC, the prevalence of autism in the United States is approximately 1 in 54 children. This means that the odds of having a child with autism are less than 2%.

If you are concerned about the odds of having a child with autism, there are steps you can take to reduce your risk. These include maintaining a healthy lifestyle before and during pregnancy, seeking genetic counseling if you have a family history of the disorder, and being aware of the early signs of autism so that you can seek early intervention if necessary.

The Role of Genetics in the Development of Autism

While the exact cause of autism is not yet known, research has suggested that genetics plays a significant role in its development. Studies have shown that if one identical twin has autism, there is up to a 90% chance that the other twin will also have it. This suggests a strong genetic component to the disorder.

Scientists believe that multiple genes may be involved in the development of autism, and research is ongoing to better understand these genetic factors.

Some studies have identified specific genes that may increase the risk of developing autism, while others suggest that certain gene mutations may play a role.

It’s important to note, however, that genetics alone does not account for all cases of autism. Environmental factors, such as exposure to toxins or infections during pregnancy, may also contribute to its development.

While there is no cure for autism, understanding the role of genetics in its development can help researchers develop more effective treatments and interventions for individuals with the disorder.

Additionally, genetic testing and counseling can help families understand their risk for having a child with autism and make informed decisions about family planning.

Different Types of Genetic Testing for Families at Risk for Autism

If you have a family history of autism or are otherwise concerned about your risk of having a child with the disorder, genetic testing may be an option to consider. There are several types of genetic testing available that can help identify potential risk factors and provide information about your likelihood of having a child with autism.

One type of genetic testing is called chromosomal microarray analysis (CMA). This test looks for changes in the number or structure of chromosomes, which can be associated with an increased risk of autism and other developmental disorders. CMA is typically performed using a blood sample and can be done prenatally or after birth.

Another type of genetic testing is whole-exome sequencing (WES). This test looks at the exome, which is the part of the genome that contains instructions for making proteins.

WES can help identify specific gene mutations that may increase the risk of developing autism. However, it’s important to note that not all cases of autism are caused by gene mutations, so WES may not provide answers for everyone.

Finally, there is also targeted gene sequencing (TGS), which focuses on specific genes that have been linked to autism. TGS can help identify mutations in these genes that may increase the risk of developing the disorder. Like WES, however, TGS may not provide answers for everyone.

It’s important to note that while genetic testing can provide valuable information about your risk of having a child with autism, it does not guarantee a diagnosis. Additionally, some families may choose not to pursue genetic testing due to personal beliefs or concerns about privacy.

If you are considering genetic testing, it’s important to speak with a healthcare provider or genetic counselor who can help you understand your options and make informed decisions about your care. With proper care and support, individuals with autism can lead fulfilling lives and achieve their full potential.

The Importance of Early Intervention for Children with Autism

Early intervention is crucial for children with autism. Research has shown that early diagnosis and treatment can greatly improve outcomes for children with ASD. The earlier a child receives intervention, the better their chances are for improving communication, socialization, and behavior.

Some common early interventions for children with autism include speech therapy, occupational therapy, behavioral therapy, and social skills training.

These interventions can help children develop important skills such as language and communication, self-care, play and leisure skills, and social interaction.

It’s important to note that every child with autism is unique and may require different types of interventions depending on their individual strengths and needs.

This is why it’s important to work closely with healthcare professionals to develop an individualized treatment plan that addresses the specific needs of your child.

Early intervention can also benefit parents and caregivers by providing them with the knowledge and tools they need to support their child’s development.

Many early intervention programs offer parent education and support services to help parents better understand their child’s condition and learn strategies for promoting positive behaviors.

In conclusion, early intervention is essential for children with autism. By providing appropriate interventions as early as possible, we can help these children reach their full potential and improve their quality of life.

Types of Interventions for Children with Autism

There are various types of interventions available for children with autism, and the best approach will depend on the individual needs and strengths of each child. Here are some common types of interventions:

Behavioral Therapy

Behavioral therapy is a type of intervention that focuses on teaching children new skills and behaviors while also reducing problem behaviors. It uses positive reinforcement to encourage desired behavior and may involve breaking down complex skills into smaller, more manageable steps.

Speech Therapy

Speech therapy can help children with autism improve their communication skills. This may include working on language development, social communication, and nonverbal communication such as gestures or facial expressions.

Occupational Therapy

Occupational therapy can help children with autism develop the skills they need to perform daily tasks such as dressing, eating, and grooming. It may also focus on developing fine motor skills needed for activities such as writing or using utensils.

Social Skills Training

Social skills training helps children with autism learn how to interact with others in social situations. This may include teaching appropriate conversational skills, taking turns during play, and understanding social cues such as body language.

Sensory Integration Therapy

Sensory integration therapy helps children with autism who have sensory processing issues. It involves exposing them to different sensory experiences in a controlled environment to help them become more comfortable with different sensations.

It’s important to note that not all interventions work for every child, and it may take some trial and error to find the right combination of therapies for your child. Additionally, early intervention is key – starting interventions as soon as possible can lead to better outcomes for children with autism.

FAQs

What are the odds of having a child with autism if I’m under 35?

While the odds of having a child with autism may increase with age, the majority of children with autism are born to parents who are under the age of 35.

In fact, most children with autism are diagnosed by the age of four, indicating that the disorder likely has its roots in early brain development. According to the CDC, the prevalence of autism in the United States is approximately 1 in 54 children. This means that the odds of having a child with autism are less than 2%.

What can I do to reduce my risk of having a child with autism?

While there is no surefire way to prevent autism, there are steps you can take to reduce your risk. Maintaining a healthy lifestyle before and during pregnancy is important. This includes getting regular exercise, eating a balanced diet, and avoiding alcohol and tobacco products.

Seeking genetic counseling if you have a family history of the disorder can also provide valuable information about your risk. Additionally, being aware of the early signs of autism so that you can seek early intervention if necessary can help improve outcomes for children with ASD.

Is there a cure for autism?

There is currently no cure for autism. However, early intervention and appropriate therapies can greatly improve outcomes for individuals with ASD. The goal of treatment is not to “cure” or “fix” an individual but rather to help them develop important skills such as communication, socialization, and behavior so that they can reach their full potential.

Does genetics play a role in the development of autism?

Yes, research has suggested that genetics plays a significant role in its development. Studies have shown that if one identical twin has autism, there is up to a 90% chance that the other twin will also have it. This suggests a strong genetic component to the disorder. However, environmental factors, such as exposure to toxins or infections during pregnancy, may also contribute to its development.

What types of interventions are available for children with autism?

There are various types of interventions available for children with autism, and the best approach will depend on the individual needs and strengths of each child.

Some common types of interventions include behavioral therapy, speech therapy, occupational therapy, social skills training, and sensory integration therapy.

The goal of these interventions is not to “cure” or “fix” an individual but rather to help them develop important skills so that they can reach their full potential. It’s important to note that not all interventions work for every child, and it may take some trial and error to find the right combination of therapies for your child.

Summary

In conclusion, the odds of having a child with autism increase with the age of the mother and father, but the majority of children with autism are born to parents who are under the age of 35.

While the exact cause of autism is not yet known, there are steps you can take to reduce your risk and ensure that your child receives the support they need if they are diagnosed with the disorder.

The Odds Of Having a Child With Autism By Age





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There are so many questions surrounding children and autism today. While there is still no one known “cause” of autism, research shows that advanced parental age may impact autism rates. While there is still a lot of research to be done on the subject, there are many people who have questions related to autism odds. 

 

Here’s what every parent needs to know. 

 

Autism Studied By Generations 

One of the few things that experts today know about some of the potential causes of autism spectrum disorder (ASD) is advanced maternal age. Studies indicate that older parents are more likely to have a child with autism. However, there is still some debate on the percentage of increase. Numbers vary anywhere from 5 percent to 400 percent. 

 

While there have been plenty of studies on advanced maternal age and a number of health issues (including autism). Research actually shows that older fathers are especially likely to have children with autism. Keep in mind, there is no clear indication that parents age actually causes autism. It’s important to understand the difference between higher risk and actual causes. 

 

However, new research also shows that children who have older grandparents, and whose parents were born to older mothers are also more likely to have autism. More research is needed on the topic, but this early research suggests there is a possible transmission of autism risk across generations.  

 

Autism Parents By Age 

Research into autism and parents really breaks down some of the risks associated with maternal age and children. One study found that the chance of having ASD for children born to parents who are in their thirties is up to 10 percent higher than parents who are 25 to 29 years old. 

 

The same researchers found that the chance of developing ASD is 50 percent higher when the parents are in their 40s or 50s. In fact, one study from the Mount Sinai School of Medicine found that children born to men over the age of 40 were 5.75 times more likely to have autism than children born to men under the age of 30. This particular study found that there was no link to maternal age and offspring with autism. 

 

This particular study really opened up the floodgates on research between autism parents and age. While some studies found that maternal age was a factor, others suggested it may only be impacted by the father’s age. With so many different reports and studies, most experts agree that advanced age by both parents can be a contributing factor. 

Here are three of the biggest published studies that reveal insight on advanced age and children with autism. 

 

  • One study in California that looked at 7.5 million births found that the age of the maternal parents had greater implications for ASD risk than the paternal age.  
  • In a 2016 meta-analysis that looked at 27 different studies on autism and parental age, researchers found that every 10 year increment in age was associated with a 18% to 21% increase in likelihood of autism.
  • A California study that looked at more than 4.9 million births in California found that while older parents in general increased the risk of autism, advanced maternal age instead of paternal age poses a greater risk for developing ASD.

 

It’s important as a parent or potential parent that you are able to look at the full picture of all the research out there on autism rates and age so that you can have all of the facts on the topic.

 

The most important thing to remember is that there is still research being done on the topic and still a lot to learn about the correlation between the two.

 

With such a large pool of data and much of it lacking full definitive answers, there is no way to determine the “odds” of having a child with autism based on age alone, but this information is significant and is helping pave the way for further understanding of ASD in the future.

 

What Causes Autism Spectrum Disorder?

Ultimately, experts still don’t know exactly what causes ASD, but there are some links or “risk factors” that could make it more likely that children develop ASD. These are some of the most common factors: 

 

  • Environment 
  • Genetics
  • Biology
  • Difficult birth
  • Infections during pregnancy  

 

Of course, as previously discussed, advanced parental age can also be a factor. There are a number of reasons why this may happen, but experts still have questions. Here are some of the contributing factors that autism experts are looking into that experts think may be the reason why older parents are more likely to develop autism than younger ones, this includes:

 

  • Genetic mutations from the cells in sperm being exposed to more toxins over time.
  • Social issues related to older adults reproducing and high-functioning autism
  • Socioeconomic levels, as older parents tend to have more means and be ore likely to get autism evaluations for their children with mild cases
  • Unknown biological causes that still need additional research

 

While there isn’t much you can do to ensure that you child won’t develop autism, there are resources available that can help your child with autism should you get a formal diagnosis. This includes enrolling children in different behavioral programs such as Applied Behavioral Analysis (ABA) which is designed to give children with autism the tools they need to overcome different behavioral challenges.  

 

If you are ready to work with the best ABA therapy provider in New York, New Jersey or Indiana, give us a call at (732) 402-0297. Our dedicated team is ready to help and we will treat you like family.

 

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Evgenia Ignatieva: “Autism is followed by a happy life”

The probability of having a child with autism among all families in the world is 1%. This means that every hundredth couple’s pregnancy ends with a special baby. According to various studies, there are about 200 thousand autistic children in our country. In the Ulyanovsk region, according to the regional Ministry of Health, there are 387 children with autism spectrum disorders (ASD), two years ago there were 336 of them. The statistics are growing, and with it the need for programs to integrate children with chromosomal pathology into the daily life of society.

How well the system of helping children with ASD works, how NGOs help, and whether society is ready to fully understand and accept the “rain children”, we talked with the mother of teenagers with autism, an employee of the Sail of Hope social service center in Kuzovatovo Evgenia Ignatieva.

– When you started to notice “oddities” in the behavior of children, what were the first alarms?

– Ilya is preparing to celebrate his 16th birthday in a couple of weeks, Sophia turned 14. It’s hard to say exactly when it was, but I clearly remember the key moments. The main thing is the lack of coherent speech by the age of three, the children, being the weather, did not play with each other, did not play with me. I was surprised that they sometimes do not respond to requests to name an object, cannot withstand prolonged eye contact, walk on tiptoe and wave their arms. As it became a discovery for me later – all these are signs of ASD.

From birth, they were in their own world, and if in kindergarten it was imperceptible, then during the preparation for school, the question of turning to doctors was finally overdue.

– The probability of giving birth to a second child with autism in a family where such a child is already being raised fluctuates at the level of 15%. Did you fall into this risk group, how did both pregnancies develop and were there any prerequisites?

– Absolutely not, we were exemplary parents, as far as I know, there are no carriers of the disease in the family. With Ilya, I lay on conservation several times, there were problems with pressure, with Sophia, an ideal pregnancy for all indications proceeded. I was 19years, I knew nothing about autism, as did many of my surroundings. To say that the doctors’ words were a blow to us is to say nothing.

– Autism is not a disease or a diagnosis, but a condition, doctors say. How do people with chromosomal pathology see the world?

– Probably amazing and not like the rest of us. There are studies that for them everything happens at an accelerated pace. After reading a ton of literature on this subject and listening to hundreds of recommendations, I noted for myself that ASD in one form or another is not uncommon. There are many special children, and our task is to teach them how to live in this world.

– It is still not completely known whether autism is a genetic disease. Scientists say that it is associated with a change in the genome, and the risks increase with the age of the parents. Among the factors for the occurrence of gene mutations are called poor ecology, drug treatment of infertility and products with GMOs. Have you tried to understand the reasons, and what did it lead to?

-You could say it’s useless. We have not yet been able to understand why we replenished the statistics, but now it does not make sense. The only thing I regret is that I didn’t turn to specialists earlier, but then personal problems added to the overall picture – the breakup of the family. I didn’t want to notice that something was wrong with my children, I hoped that it was just age. Plus, the “autism is embarrassing” factor also took place.

– Is the regional system of care for children with ASD, including medical care, built effectively?

– More than endless gratitude to the doctors and all other specialists who work with us, and the “Sail of Hope” turned out to be a salvation and a great support. I remember how Sophia perceived the first classes there with distrust, and I see how she runs with joy to the teachers now. Over the years, no matter how loud it may sound, we have become a family. I found a job and an environment where I am fully understood, and the children have regular classes and friends. Sophia recently asked me to write a letter to a boy she met on a trip together. I listened and recorded, called my mother, they are very happy, now we are waiting for an answer.

Of course, parents should be prepared for planned treatment, for serious troubles and expenses, for going from office to office. But the way our system works is encouraging. Annually, children’s disability pensions are indexed, social security helped me build a house, and all regional actions also do not bypass us.

– Like ordinary children, Ilya and Sofya went to school from the age of 7, how are their classes going, and how difficult was it to find a suitable teacher?

– Classes last from 15 to 40 minutes, we study at school No. 1 Kuzovatovo according to a separate program. Ilya copes well, it is more difficult with Sophia, but her character must also be taken into account. Thanks to the teachers for their professionalism and patience. But, unfortunately, this was not always the case, at first the son went to an ordinary rural school, studied at home. Everything had to be interrupted and moved, the teacher refused to accept such a child.

– I know that Ilya is making progress in drawing, and Sofya likes swimming, tell us about their achievements.

– Yes, Ilya confirms the general judgment about the giftedness of autists. He has a phenomenal memory, he can say what we did exactly 2-3 years ago. We recently discovered his passion for drawing and modeling, which turns out to be even more successful than that of ordinary peers. He likes to watch educational programs and films, loves music. Sonya’s attention is harder to focus on for a long time, but I can see how she strives to learn new skills, whether it’s swimming or communication, here even the smallest step is a victory.

– An increasing number of programs are focusing on supporting not only children with disabilities, but also their parents, one of these is the ONF project “About her” . What do mothers of special children want, and how can the business and non-profit sector help?

– We want understanding and acceptance, communication with the same parents and children. All programs have the right course – to help mothers unload and find the strength to move on. We need to arrange more joint events and talk about the accessible environment and how to create it.

– Based on the experience of “special” motherhood at the age of 16, tell me, is society ready to accept people with autism?

– It would be cunning to say unambiguously: yes or no. I can not judge everyone, but I was lucky to be born in a circle of understanding and kind people. Special thanks to my mother and sister, who are always ready to help. Of course, it is easier to live in a complete family with autism, but here you often have to rely only on yourself.

There are people who are frankly stiff, ignorant and evil; they continue to look at my children with apprehension and distrust. Although they never offended anyone, they did not go into negativity, on the contrary, they are open and ready to be friends. It’s hard to deal with when the checkout asks you to move away or the neighbors look reproachfully, but I have to introduce them not only to the loyal world.

– Parents who have just embarked on this path will be helped by … what?

– Support for loved ones, sometimes specific household. It will help to study the issue, doctors and teachers, psychologists, the main thing is not to be silent. It will help to realize that for your kids you are a ticket to a great life, you must teach them to live independently, take care of themselves and their neighbors, be a self-sufficient person and not pay attention to the attacks of “aunts in white coats”.

You can’t give up, you can’t worry, children read everything and literally repeat after you, don’t feel sorry for yourself, try to apply a proactive approach and a positive attitude to any problem, believe me, you are not alone with autism.

Ten years ago I was in despair, and now I have hope for their happy family future, I believe that everything will turn out well for my family.

Alena Mironova

How likely is it to have a second child with autism?

01/23/14


Answer to a question from parents of a child with autism who are thinking about having other children

Source: Association for Science in Autism Treatment

Question: “My little son has autism. I am not aware of other members of my family who have been diagnosed with autism, but I would like more children. How likely is it to have another child with autism?

Answered by Dr. Scott M. Myers, Pediatrician for Neurological Development, Geisinger Institute for Autism Medicine and Development, Lewisburg, USA.

This important question is asked by many parents who are thinking about having other children. The answer largely depends on whether a specific genetic cause of autism spectrum disorder (ASD) has been identified in your child. Currently, genetic testing can identify a specific cause in about 15% of children with ASD, and this information allows for more accurate counseling on the risk of a new diagnosis in a given family. In cases where the genetic cause is unknown, different types of studies have identified varying degrees of risk.

Epidemiological studies reveal the characteristics of diseases or disorders in large populations using rigorous statistical methods. These studies have shown that 4-7% of families have more than one child with ASD (Chakrabarti & Fombonne, 2001; Gronborg, Schendel, & Parner, 2013). The largest and most recent population-based study of over 1. 5 million Danish children between 1980 and 2004 found an overall risk of a new diagnosis of 7% (Gronborg et al., 2013). This type of research has many advantages, including the elimination of bias associated with informing parents and the differential participation of only those families where there is already one child with ASD. However, in such studies, the risk of a new diagnosis may be underestimated due to missed cases in this population and the tendency of couples with such children to refuse to have new children, the so-called “stop”.

Rather than include all children in a region, some studies focus only on children with ASD and their siblings. Studies involving all children born after a child with ASD have shown a 6-10% risk of ASD (Bolton et al., 1994; Chudley, Guitierrez, Jocelyn, & Chodirker. 1998; Sumi, Taniai, Miyachi, & Tanemura, 2006). However, as with epidemiological studies, they may underestimate the risk of a new diagnosis due to a stop. The stopping effect is excluded in those studies that include only families with children born after a child with ASD. In such families, the risk of re-diagnosis is higher – 8-19% (Constantino, Zhang, Frazier, Abbacchi, & Law, 2010; Ozonoff et al., 2011; Ritvo, Jorde, Mason-Brothers, Freeman, Pingree, Jones, & Mo, 1989). The highest risk (nearly 19%) was found in a large prospective study of small siblings of children with ASD who were enrolled as infants and followed closely (Ozonoff et al., 2011). However, when families that already had two or more children with ASD were excluded from the sample, the risk of re-diagnosis for this study was 13.5%.

So the short answer is that if a couple has one child with ASD of unknown cause, the current estimated risk of ASD in the next child is about 10% based on the most recent and high-quality research. Because this is much more than the 1% chance of ASD in an average child, the American Academy of Pediatrics recommends very careful surveillance and screening for ASD during routine screening for all younger siblings of children with ASD (Johnson, Myers, & Council on Children With Disabilities, 2007). If a couple already has two or more children with ASD, then the probability that the next child will have ASD can reach 32-35% (Ozonoff et al., 2011; Ritvo et al., 1989).

Two more points related to repeated diagnoses are worth noting. First, some studies suggest that the risk of ASD for later children is higher if the first child with ASD was a girl, but if the first child was a boy, then the risk is lower (Ritvo et al., 1989; Jorde et al., 1991; Sumi et al., 2006). On the other hand, more recent studies have not shown that the sex of a child with ASD has a significant effect on the risk of rediagnosis in subsequent children (Goin-Kochel et al., 2007; Constantino et al., 2010; Ozonoff et al., 2011). Thus, at the moment there is not enough evidence that the gender of a child with ASD should be taken into account when assessing the risk of re-diagnosis. Second, some studies have shown that 20-25% of siblings who do not meet criteria for ASD still have speech impairment or delay (Constantino et al. , 2010; Lindgren, Folstein, Tomblin, & Tager-Flusberg , 2009). The studies on the risk of rediagnosis of ASD reported above did not take into account the risk of speech delay.

It is important to understand that rediagnosis risk estimates are group averages, and that if the specific genetic cause of ASD in a child is not known, it is not possible to provide correct counseling on the individual level of risk for that family. That is why it is very important that families are offered genetic testing for their child with ASD. Currently, if the clinician does not suspect the presence of a specific disorder or syndrome based on the results of the examination, then a complete chromosomal microarray analysis and fragile X molecular analysis are recommended (Manning & Hudgins, 2010; Miller et al., 2010). These tests are usually performed on a blood sample from a child with ASD and are able to identify a specific cause in about 15% of people with ASD, and this proportion is likely to increase due to new technologies such as exome sequencing and whole genome sequencing, which are becoming increasingly available and applied for clinical purposes (Abrahams & Geshwind, 2008; O’Roak, et al. , 2012; Sanders et al., 2012).

For families whose child has been diagnosed with a genetic cause of ASD, the risk of re-diagnosis depends on the genetic problem found. For example, the risk can be as high as 50% if a child has inherited a specific extra segment of DNA on chromosome 15 (15q11-q13) from their mother. Or the risk may be only 1% or less if the child is “missing” or has an “extra” section of DNA (called a microdeletion or microduplication) but neither parent is a carrier.

It is also important to understand that if genetic testing does not reveal a specific cause, this does not mean that the cause is not genetic, it only means that currently the tests performed cannot identify it.

So, if a couple has one child with ASD of unknown cause, current estimates suggest that the risk of ASD in the next child is about 10% on average for the group. If a couple has questions about the risk of re-diagnosis, they should seek genetic counseling so that the information is appropriate for their specific situation. Due to the increased risk of ASD, all younger siblings of a child diagnosed with ASD should be screened using ASD screening tools to ensure early diagnosis and intervention.

Abrahams, B. S., & Geschwind, D. H. (2008). Advances in autism genetics: On the threshold of a new neurobiology. Nature Reviews Genetics, 9, 341-355.

Bolton, P., Macdonald, H., Pickles, A., Rios, P., Goode, S., Crowson, M., Rutter, M. (1994). A case-control family history study of autism. Journal of Child Psychology & Psychiatry & Allied Disciplines, 35, 877-900.

Chakrabarti, S., & Fombonne, E. (2001). Pervasive developmental disorders in preschool children. JAMA, 285, 3093-3099.
Chudley, A. E., Guitierrez, E., Jocelyn, L. J., & Chodirker, B. N. (1998). Outcomes of genetic evaluation in children with pervasive developmental disorder. Journal of Developmental and Behavioral Pediatrics, 19, 321-325.

Constantino, J. N., Zhang, Y., Frazier, T., Abbacchi, A. M., & Law, P. (2010). Sibling recurrence and the genetic epidemiology of autism. American Journal of Psychiatry, 167, 1349-1356.

Goin-Kochel, R. P., Abbacchi, A., Constantino, J. N., & Autism Genetic Resource Exchange Consortium. (2007). Lack of evidence for increased genetic loading for autism among families of affected females: A replication from family history data in two large samples. Autism, 11, 279-286.

Gronborg, T. K., Schendel, D. E., & Parner, E. T. (2013). Recurrence of Autism Spectrum Disorders in Full- and Half-Siblings and Trends Over Time: A Population-Based Cohort Study. JAMA Pediatrics, 2259, E1-E7, doi:10.1001/jamapediatrics.2013.2259.

Johnson, C.P., Myers, S.M., & Council on Children with Disabilities. (2007). Identification and evaluation of children with autism spectrum disorders. Pediatrics, 120, 1183-1215.

Jorde, L. B., Hasstedt, S. J., Ritvo, E. R., Mason-Brothers, A., Freeman, B. J., Pingree, C., Mo, A. (1991). Complex segregation analysis of autism. American Journal of Human Genetics, 49,932-938.

Lindgren, K. A., Folstein, S. E., Tomblin, J. B., & Tager-Flusberg, H. (2009). Language and reading abilities of children with autism spectrum disorders and specific language impairment and their first degree relatives. Autism Research, 2, 22-38.

Manning, M., & Hudgins, L. (2010). Array-based technology and recommendations for utilization in medical genetics practice for detection of chromosomal abnormalities. Genetics in Medicine, 12, 742-745.

Miller, D. T., Adam, M. P., Aradhya, S., Biesecker, L. G., Brothman, A. R., Carter, N. P., Ledbetter, D. H. (2010). Consensus statement: Chromosomal microarray is a first-tier clinical diagnostic test for individuals with developmental disabilities or congenital anomalies. American Journal of Human Genetics, 86, 749-764.

O’Roak, B. J., Vives, L., Girirajan, S., Karakoc, E., Krumm, N., Coe, B. P., Eichler, E. E. (2012). Sporadic autism exomes reveal a highly interconnected protein network of de novo mutations.