Everyday life with autism
Understanding autism: A journey through parenting, challenges, and support
Rose Mabiza • 9 mins read
2 October 2024
Parenting an autistic child is both a unique challenge and a rewarding journey, filled with moments of profound connection and understanding. Autism, or Autism Spectrum Disorder (ASD), is a neurodevelopmental condition that affects how a person communicates, interacts with others, and perceives the world. Raising awareness about autism is crucial—not only to foster understanding but to create a society that embraces neurodiversity and supports autistic individuals and their families.
In this blog, Rose delves into the challenges faced by parents of autistic children, practical strategies that can help families navigate these challenges, and the importance of autism awareness. Along the way, we'll highlight key organisations, including The Mandatory Training Group, that offer support, education, and advocacy for autism.
Key facts and statistics
To understand the scope of autism, here are some important facts and statistics:
- Prevalence - According to the CDC, about 1 in 36 children is diagnosed with autism in the United States, with similar prevalence rates observed globally.
- Diagnosis in the UK - The National Autistic Society estimates that around 700,000 people in the UK are autistic, meaning approximately 1 in 100 people are affected.
- Global impact - Autism affects individuals of all races, ethnicities, and socioeconomic backgrounds, and early diagnosis and intervention are key to providing the best support.
- Gender differences - Boys are more likely to be diagnosed with autism than girls, but recent research shows that autism in girls may be underdiagnosed due to differences in how symptoms manifest.
What is autism?
Autism Spectrum Disorder (ASD) is characterised by a range of challenges in social interaction, communication, and behaviour. The "spectrum" nature of autism means that it affects individuals differently, ranging from mild to more severe symptoms. Some autistic individuals may be highly verbal, while others are non-verbal. Sensory sensitivities, repetitive behaviours, and difficulties in understanding social cues are common, but every autistic individual is unique.
Challenges faced by parents of autistic children
Communication barriers
One of the primary challenges in raising an autistic child is the difficulty in communication. Some autistic children may struggle with language development, while others may use alternative forms of communication, such as sign language or picture boards. For parents, the inability to understand or meet their child’s needs due to communication difficulties can be emotionally taxing.
Sensory overload
Autistic children often have heightened sensitivities to sounds, lights, textures, or even smells. This can result in sensory overload, leading to meltdowns that can be overwhelming for both the child and the parent. Managing these sensory issues can be challenging, especially in public settings where these triggers are harder to control.
Social isolation
Because autistic children may find social interactions challenging, families can sometimes feel isolated. Finding social groups or playdates that are understanding and inclusive can be difficult. This isolation can also extend to parents, who may feel that others don’t understand the complexities of raising an autistic child.
Misunderstanding and stigma
In public or school settings, the behaviours of an autistic child may be misunderstood by others as disobedient or strange. This lack of awareness can lead to judgment or stigma, which can make life even more challenging for families trying to ensure their child is accepted.
Strategies for parenting an autistic child
Establishing structure and routine
Many autistic children thrive on routine and predictability. Establishing a structured day with consistent routines can help reduce anxiety and give your child a sense of security. Visual schedules, timers, and set meals or bedtimes can help create a calming environment.
Learning your child’s unique communication style
Communication can be verbal, but it can also take other forms. Learning to understand your child’s unique way of communicating—whether through gestures, expressions, or alternative communication devices—can strengthen your connection and help you respond to their needs more effectively.
Sensory-friendly environments
Identifying sensory triggers and making adjustments in the home or school environment can reduce stress. Sensory tools like noise-cancelling headphones, weighted blankets, or fidget toys can be helpful in managing sensory overload. Creating a quiet, calming space at home for your child to retreat to when they feel overwhelmed is another effective strategy.
Building a support network
Raising an autistic child can feel overwhelming at times, which is why having a strong support network is essential. This network might include family, friends, teachers, or support groups. Autism-focused organisations can also provide resources, guidance, and a sense of community.
The Importance of autism awareness
Why awareness matters
Autism awareness plays a crucial role in fostering understanding, acceptance, and support for autistic individuals. It helps reduce the stigma surrounding autism and creates a more inclusive society where autistic people and their families feel understood and accepted. Awareness campaigns also highlight the need for better resources, services, and accommodations for autistic individuals, particularly in schools, workplaces, and public spaces.
How awareness impacts families and autistic individuals
- Early diagnosis and intervention - Awareness can lead to earlier diagnoses, which in turn helps families access early intervention services that are critical for development.
- Community support - Awareness encourages the formation of support systems, which can offer guidance, resources, and empathy to families.
- Reduced stigma - Public understanding of autism can reduce the judgement that families face in public spaces, making it easier for autistic individuals to navigate society without feeling alienated.
Organisations that raise awareness and offer support
Here are some key organisations that are dedicated to raising autism awareness and providing support to families:
National Autistic Society (UK)
The National Autistic Society is the leading UK charity for autistic people and their families. They provide information, support, and training, as well as advocacy for better services and public understanding. www.autism.org.uk
Autism Speaks (Worldwide)
Autism Speaks is a global organisation that focuses on promoting solutions for autistic individuals through advocacy, support, and research. They also organise events like World Autism Awareness Day to shine a light on autism. www.autismspeaks.org
Ambitious About Autism (UK)
Ambitious About Autism works to raise awareness and provide practical support to autistic children and young adults. They offer education services, training, and help with transitions to adulthood. www.ambitiousaboutautism.org.uk
The Autism Society (USA)
One of the oldest grassroots autism organisations, The Autism Society, provides resources, advocacy, and support to individuals and families, with a focus on improving the quality of life for autistic individuals. autismsociety.org
The Mandatory Training Group (UK)
As a leading UK provider of autism-related content and training, The Mandatory Training Group offers comprehensive solutions for professionals and families. Through our training, we aim to improve understanding of autism, promote inclusivity, and provide practical strategies for care and support. Our resources are designed to help individuals working in health and social care, education, and other sectors learn how to better support autistic individuals. www.mandatorytraining.co.uk
Recommendations for families
Educate yourself and others
Autism is a complex condition, so continuous education is key. Reading, attending workshops, and connecting with professionals will help you better understand your child’s needs. Educating others in your child’s life—teachers, extended family, and friends—can foster more supportive environments.
Access professional support
Seeking out professionals like behavioural therapists, speech therapists, or occupational therapists can provide your child with skills to navigate challenges and help you learn effective parenting strategies.
Join support groups
Connecting with other parents who are on similar journeys can provide emotional support and practical advice. Online communities, local meetups, and autism organisations often offer support groups for parents.
Conclusion
Autism awareness isn’t just about knowledge. It’s about action. Whether you are a parent, educator, or simply a member of the community, understanding autism and advocating for inclusivity helps build a world where autistic individuals can thrive. As parents, the journey may be difficult at times, but it is also filled with the joy of seeing our children grow, learn, and break through barriers in their own unique ways.
Let’s work together to raise awareness, advocate for resources, and create supportive communities for our children. If you’re seeking support, reach out to the organisations mentioned above, educate yourself, and never hesitate to advocate for your child’s needs.
Learn more about how you can contribute to autism awareness and understanding.
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About the author
Rose Mabiza
Rose has dedicated over 15 years to improving health and social care quality through practice, targeted education and training. Her extensive experience includes working with older adults, individuals with mental health conditions, and people with autism and learning disabilities.
