People in the community can make the lives of families who live with autism more stressful and difficult. Judgement and comments about our parenting really do not help. At the same time, learning more ways to support autism families can increase acceptance and make our lives easier.
I worked with children who had autism professionally as a teacher. I did not get what it was really like as a parent until I became one. As a teacher, you have support in the classroom with instructional assistants. You have support from administrators. You have a variety of professionals to help you meet the child’s needs. You go home at night and get the weekend off. If you are in a supportive district, you might even get a lunch break and planning period. Your responsibility is limited to the school setting and ends with the school year.
As a parent, it is just you and your significant other, if you have one. Even if you have a strong support system of family and friends, you are the one who a has lifelong responsibility for your child. You must take into account your child’s education, physical and mental health, and the possibility of lifelong care. You have the stress of trying to get your child the services they need. People judge you, your parenting skills, and your parenting choices. You really do not get it until you live it.
Families can feel very isolated due to the nature of autistic characteristics. Going out in the community where unexpected things will happen may result in major meltdowns. When a child’s meltdowns includes physical aggression, the parent may avoid public settings unless they have additional support. Interventions can and will help, but treatment is not an overnight solution. It takes time.
Ways to Support Autism Families
I surveyed a group of parents of children with autism to determine what tips they would have for others to help them feel more supported. About 15 people, including me, responded to my request. Responses were organized and fell into 8 categories. The following list is a compilation of the resulting comments within those 8 categories.
1. Do not judge
I don’t know what it is about autism, but everyone will have their 2-cents about what you should or shouldn’t be doing with your child. Just trust that you do not know what it is like to have any particular child with autism until it is your full-life responsibility as a parent. Our houses may be messy, we may have to interrupt what we are doing to clean up major spills, and we will rearrange our lives to meet the needs of our children. I have previously heard the comment, “I can tell you are a good mom because your children are happy and well behaved.” I politely thanked the man, but in my mind I thought “…just wait. I hope you don’t think I’m a bad mom when my children are having a hard time.” My children do have a hard time, particularly with waiting or changes in routine. Comments about how they are normal, that they will outgrow it, or that it is behavioral/poor parenting rather than autism-related just don’t help. If you think it, stop. If you can’t stop thinking judgmental comments, keep them in your own head.
2. Do not give unsolicited advise
We get that you are trying to be helpful, but it isn’t helpful. Typical parenting approaches may not work with atypical children. We do what we do to make it through each day. Unsolicited advise sends us the message that you think we are incompetent or clueless. Our lives revolve around autism and we know what we are doing. We probably have tried just about everything …and yes, we read that article.
3. Treat our child with respect
Treat our children as you would treat any person. Say, “hello,” and other polite comments, even if the child does not respond. The child can hear you. Verbal children with autism may not pick up on the social cues of conversation. Teasing is hurtful to the family. Just smile and be kind and teach your children to do the same. Diversity is the spice of life. Appreciate differences, including autism.
4. Be friendly
We may not be able to get out much. We probably do not have many friends. Being a friend can help give us the support we need.
5. Be understanding
Our children may have a hard time. Do not stare during a meltdown or if a child is behaving abnormally. We may not be able to spend time on the phone or accept spontaneous invitations to do something. We may have to change plans or leave early depending on how our child is doing that day. We may not be able to give you our full attention because of our child’s needs. Autism is a neurological disorder. There is no cure. A meltdown is different than a tantrum …and no, spanking won’t stop either one.
6. Be inclusive
Although children with autism may not seem interested in others, they do want friends. It is nice to be included in play dates. Encourage your own children to be friendly and inclusive too.
7. Find ways to help us out
Some families really appreciate a meal. Offer to take care of the children so the parents can go to appointments, the grocery store, or out on a date. Go with the family on outings. Come do an activity with the child so the parent can get something done in the house.
8. Ask questions
Find out more about autism. Ask the parents about what kinds of things work for their child. Ask how you can help.
Each child with autism has a unique personality and characteristics. The common thread among each child is that they have a neurological disorder that effects they way they think and behave. There are no physical markers for autism. Our children will look just like other children. Families who have children with autism will have experiences, joys, and stresses that other families will not face. Please follow the 8 suggestions to support autism families and make our lives easier.
You can down load a .pdf handout of the 8WaysToSupportAutismFamilies. Please feel free to share this handout anywhere in the community where it could be helpful.
Join our support group! This group is for anyone who works with or otherwise supports children with special learning or behavior needs.