Challenges of Raising a Child with Autism

A look at some of the challenges of raising a child with autism and possible solutions to consider.

Children with autism are unique, differently-abled individuals who learn and develop in ways that can differ from those of their neurotypical peers. Parents of children on the spectrum face these various learning styles daily and fight their hardest to ensure their child can grow and thrive in their current environment.

In the meantime, however, parents may experience burnout, isolation, loneliness, anxiety, and/or depression. Of course, the love for their children never wavers, but it is important for society to recognize the challenges of raising a child with autism, and how we can best support those families as they navigate a challenging journey.

There are seven challenges that stand out with regard to parents raising children with autism. More importantly, there are seven ways that we as a community can address these challenges and offer support to parents raising children with autism.

Challenge: Childcare

Finding childcare for a child with autism can be far more difficult than finding a sitter for a neurotypical child. The person must have experience watching a child with ASD, including but not limited to how to calm a child who is melting down or interact and communicate with a child who is non-verbal. Even if a parent does find someone qualified, their asking rate of pay is likely higher than a “typical” sitter and may not be affordable for already hard-working parents.

Possible Solutions

Check places such as Care.com or Easter Seals’ child development center for help with finding professionals who have training and experience in caring for children with autism. Advocates such as those at 4Cforchildren will also help you contact centers, programs, and caregivers in your area.

Challenge: Finances

Parents who have a child with ASD are more likely to struggle financially. Various therapies may or may not be covered by insurance or require a copay to receive services, and the cost adds up quickly. Parents will likely pay out of pocket for services such as tutoring, speech, physical, occupational, or mental health therapies at some point during their child’s life.

Possible Solutions

Autism Speaks has developed an extensive list of helpful resources for balancing financial situations for those raising a child with autism. There are also various grants and scholarships available for recreational, educational, and even service dogs for kids with autism.

Challenge: Stigmatization

Unfortunately, parents who have children with autism know the stereotypes that occur far too well. Parents may receive less-than-friendly looks from other parents when their child is stimming (ex., flapping their arms up and down), invading someone’s personal space, talking loudly and honestly about everything and everyone around them, or displaying overly affectionate behavior towards their parent or a sibling. The stigmatization surrounding an ASD diagnosis is crippling for parents of children with this condition and may cause feelings of isolation or loneliness. 

Possible Solutions

Advocacy! Wherever, whenever you can, spread awareness of raising a child with autism. Stigmatization most often occurs because of a lack of understanding/knowledge, and who better to hear information from than a parent themselves. Help end the stigma by spreading information like confetti and connecting with those who may not fully understand what raising a child with autism is like.

Parents may give advice with the best of intentions, but it isn’t always received that way. Parents of children with autism may experience further stigmatization of ASD in the form of unsolicited parenting advice.

This can be everything from saying the child “just needs a slap” to “I’ll never let my child act like that,” and it truly belittles the effort the parent is going through to calm a tantrum and deal with the stares of everyone around them. Parents have enough on their plates without other people offering advice for a condition they know very little about.

Possible Solutions

Like stigmatization, unsolicited parenting advice regarding your autistic child is often due to a lack of actual facts about the disorder. Parents are encouraged to inform but not argue.

Parents should take what others say about their parenting with a grain of salt, and this is applicable to parenting as a whole, not just parenting a child with autism. Parents’ efforts to advocate, inform, and spread awareness with courage and pride should continue alongside the mental reminder that parents are doing the very best they can for their children, regardless of what others may have to say.

Challenge: School advocacy

Since not everyone fully understands ASD or how it affects a child, a parent of a child with autism will likely spend significant time teaching others and advocating for their child. Parents will need to advocate for the resources they will need while at school and attend 504/IEP meetings to set up these accommodations. Frequent contact will need to be made with school personnel to ensure the proper and correct implementation of the plan is occurring.

Possible Solutions

In the years leading up to 2022, advancements in autism research, advocacy, support, and interventions have come far! This means that there are armies all over the country that aim to help families who are supporting a child with autism in any way they can.

Autism Mama Rocks the IEP is a great resource from a parent of a child with autism. Her inviting, supportive website aims to help parents navigate the 504/IEP process and advocate for their child’s needs in the school system.

Other great resources are available at the state and local community levels. Sending a child with autism to school shouldn’t be difficult!

Challenge: Self-care

Challenges with finding time for self-care are frequent in parents of children with ASD. Busy schedules for their child mean less time for themselves overall. Parents who do not regularly practice self-care may impede their mental health and well-being, leading to thoughts of being inferior to their child’s needs.

Possible Solutions

Unfortunately, there is no magic wand to ensure parents with autistic children get time for self-care, because self-care means something different to everyone. Ideally, parents could find a babysitter or caregiver for their autistic child and make a sliver of time for some self-care in their time alone. If time alone is really hard to come by, it is recommended that parents make a list of their favorite relaxing activities; it could be something as simple as driving to a coffee shop for a coffee. Either way, parents are highly advised to make time for themselves however they can and not feel guilty about prioritizing their needs, too!

Challenge: Mental health

The aforementioned feelings of isolation and loneliness are only scratching the surface of some of the mental health struggles that parents with autism face. Some of the most frequently heard described emotions are feelings of being overwhelmed, guilty, confused, angry, or depressed. Many parents have expressed their desire to see a therapist, but they recognize the fact that they may not actually have the spare time in their schedules to do so.

Possible Solutions

The Step Up for Assistance organization is dedicated to helping parents of children with autism support themselves physically, emotionally, and mentally. Connections can be made virtually or in-person, depending on the location of the family. Chat online with other parents in similar situations, or join a peer group to support a busy schedule.

Conclusion

It is important for parents of children with ASD to seek out help when they need it and try to make friends with other special needs parents for support. While these seven challenges facing parents of autistic children can be strenuous, this list is by no means comprehensive, and there still may be a lot left unsaid regarding parents’ struggles and need for support. Parents of children with autism are encouraged to be patient with and kind to themselves, reach out to other parents in similar situations, and take care of their own needs frequently.