Parents, home is the single most important place for our children to feel accepted. We must embrace ALL of our children with love and acceptance for being exactly who they are. Home is the first place our kids learn about being accepted and accepting others. It is our responsibility and privilege as parents to create a nurturing environment where each child feels valued, safe, loved and whole.
Our children are always listening and picking up on our feelings and attitudes. They’re listening to how we speak to them, about them, and closely watching how we react to other people who do the same.
When our children are young, we make decisions about where they go to elementary school, where they go to speech therapy, what doctors they see, and it’s our job to ensure that they are surrounded by others whose philosophies and actions value and respect them as people. The sad reality is there will be many situations where your child will be discriminated against because they have a disability. When any child grows up with acceptance for being who they are, they not only expect others to do the same, but they know no matter what happens elsewhere they are part of a safe, loving family who support and respect each other .
Acceptance means avoiding people and providers who indicate that their job is to fix your child , make your child “more normal”, help your child’s disability become imperceptible to others, or in any way convey that being disabled is a bad thing that must be overcome in order to be a whole person. It means avoiding people who say things like, “Jane won’t ever be able to do or learn x, y, z. ” It means avoiding providers who don’t speak to your child in an age appropriate manner or in a condescending tone.
Imagine how these negative attitudes and language impact your child’s sense of self. Actually, don’t imagine it, ask your child, LISTEN to the perspectives of adults with disabilities. Being the parent of a child with a disability is not the same as being disabled and we must listen to and educate our own children about the experiences of disabled people and disability culture. Just a few of the pieces and resources that have had a profound influence on our family; Michael Giangreco’s interview with Norm Kunc “The Stairs Don’t Go Anywhere !” and everything else on BROADREACH; “Dear Autism Parents” by Julia Bascom and everything else on Just Stimming ; everything by Ed Roberts; Keith Jones ; Larry Bissonette ; Tracy Thresher; Mia Mingus; Judith Snow; Ari Ne’eman Autism and the Ethics of Inclusion: A Matter of Civil Rights ; and many more. Listen to their experiences and opinions.
If any person indicates they have lower expectations, do not presume competence, uses functioning labels , does not value your child as a whole, complex, contributing member of society, it’s our job as parents to speak up and educate that person . It can be really hard to do if you don’t happen to have the type of personality that lends itself to confrontation, but it is necessary. If we allow someone speak to or about our child in a way that is anything but respectful, we’re not setting the right example. If our children see us speaking up, it’s much easier for them to do the same . My teenage son tells us it has had a big impact on his advocacy.
It is absolutely crucial that we carefully examine the attitudes and language of therapists, doctors, nurses and providers who work with our children. Their attitudes and language should indicate they view disability as the natural part of human diversity that it is . If they don’t and depending on how ableist their behavior is, you may want to give them the benefit of the doubt and try and enlighten them. Send them some of the articles and websites about disability by disabled people listed above. Maybe they haven’t read anything about disability culture, or the enormous amount of research indicating not only that high expectations and inclusion in one’s community are vital for each of us. Maybe they aren’t aware that treating each autistic person, each disabled person, with the same level of respect that they treat every other human is simply the right thing to do. Try and educate them, you’ll know pretty quickly if they’re listening and if they will try and change their mindset. If they can’t or won’t – switch providers. Limit your child’s exposure to people who are ableist. It matters. Acceptance starts at home.
Please don’t buy into the narrative of fear perpetuated by large “advocacy organizations” that don’t have the very people they claim to advocate for involved in their leadership. Try and stay away from the “My Life is Hard Because My Child Is Autistic” subculture so prevalent with some of the “Mom Bloggers” . It’s not acceptable or fair to publicly blame marital, health or financial problems on any child . Children don’t destroy marriages, cause illness, or financial ruin . They’re children.
Celebrate April with love, acceptance, and pride in your home.
Note : Apologies to the amazing Jean Winegardner at Stimeyland and to Autism Acceptance Month. Jean wrote an incredible post Acceptance Begins at Home last year. I read it, loved it, shared it, and it obviously influenced the title of this post. Both Jean and the folks at Autism Acceptance Month were incredibly kind and did not point out my plagiarism to me. Yesterday, I was reading ” Autism Acceptance : A Parental Perspective”, which is fabulous, by Beth Ryan ( Love Explosions, Parenting Autistic Children with Love and Acceptance) and started looking through some of the posts from last year and saw Jean’s “Acceptance Begins at Home”. Aww, how did I do that?
[…] on this theme, read Lauri Swann Hunt’s blog post Parents – Acceptance Starts at Home. “If any person indicates they have lower expectations, do not presume competence, uses […]
[…] Another excellent post on there today, related to this topic in many ways, was about how Acceptance Starts at Home… […]
Sorry, I also wanted to add that i agree how important advocacy is when our children are unable to advocate for ourselves. I think sometimes we can be hesitant to, but when they truly can’t, I think they often really appreciate it. I have had to stand up in a crowded bus and educate everyone there about autism and why my daughter having a meltdown for four hours over a broken wifi signal does NOT MEAN SHE IS SPOILED or SICK and no, SPANKING WILL NOT HELP, nor will your insults, she is just as unhappy as you are because she can’t let this go in her mind no matter how hard she tries!!! This is how she is wired! so shut up or offer some help, maybe let her use your phone as I didn’t have one at the time, that’s literally all we needed and things would be fine. One lady finally helped. I had exhausted all other diversions at the time, and none worked because it HAD TO BE THE WIFI.
Another time someone in a store made a rude comment to her about her echolalia stimming, which she does in busy stores sometimes (assuming she was just not listening to her mom, like it was any of his business?) and she cried. I went right up to the guy and said, “Excuse me, what did you say to my daughter?” I made him repeat it, showed her that she was crying and very upset about it, and explained that she has something called autism, she does this, it is normal for her, maybe you should read about it… would you make a rude comment to a blind child for bumping into a wall, or a deaf child for having a “funny accent?” She has the kind that just sounds like she is talking to herself, it isn’t particularly peculiar prosody or anything except for the repetition, and people often mistake it as her being rude and not listening.
Afterward I realized I might have embarrassed her and I asked her if I had. She said, “No Mom I was so proud of you. I was glad and relieved. Thank you.”
I think this is key too, however our kids communicate, try to check in with them and make sure things are ok… that we are listening to them, advocating for them the way THEY need and want. And of course listen to them… even if they have a very hard time communicating in ways we are familiar with. Ask questions, find what makes them comfortable. Set limits… but respect theirs too. Too many parents of autistic kids try too hard to weed out behaviors that are not at all problematic or serious. For example someone I know was almost in tears about her struggles to get her daughter, who has Aspergers, to do homework every night. Get the school to remove the homework requirement. Who cares? What is more important, your child’s sanity (and yours) or more work at the end of an already hard day for them? Spend that time developing their special interest! Chances are they are much more brilliant in that anyway and will have a great chance of success in it if they are supported rather than pushed to be “normal” and “well rounded.” If the school is not supportive then screw them and make your own executive decisions as a parent to support your kids as they need you to.
As a mom with Aspergers who also has a child with Aspergers, ADHD and OCD, I agree with you… but I think at the same time, it’s important to understand that IT CAN BE really hard, unusually hard, for parents (even autistic parents) to parent autistic children. I am extremely autism-positive. I teach my daughter self-advocacy, go to great lengths to support and nurture her special interests and obsessions, and celebrate them with her. I embrace her autism wholeheartedly as I do my own.
But I was not diagnosed until much later in my life after I had her. Not only did this mean I went through my whole life knowing something was “wrong” with me because of all the negative reactions I received from others, testing and psychological treatments I underwent, etc… but I knew that I had to fix and correct it to make others feel comfortable. I learned to act and compensate, and hide my autistic qualities, to mistrust my gut instincts, and to fear the best parts about myself in order to fulfill society’s expectations, which were communicated very strongly. And while I don’t want to do the same for my child, I still have this conditioning. And to an extent, I have to try to make her life as easy as possible.
We don’t live in a completely autism-friendly world, at all! So yes, parenting an autistic child IS very hard. Not because autism is bad or our children are bad, but for the same reasons it would be hard to raise a gifted child, a child with bipolar disorder, or a child with Down’s Syndrome. Each of these as well brings gifts as well as special challenges. And yes, it is hard.
I understand that whining about how rough it is is not a healthy solution. But it’s also not wise to not allow that space for parents to talk about the hard parts of raising a child with autism, along with the unique wonders and joys it brings. It DOES have special challenges. Having to worry about your 10-year-old running into the street, dealing with strangers criticizing your child and your parenting because they are clueless, having to do your shopping alone because you can’t deal with another meltdown in public, yes, all of this is hard, and it’s in many ways a lot harder than the experience of parenting NT children. But that doesn’t make it BAD.
Again, this is coming from a mom on the spectrum. I relate to my daughter much more than I think a lot of NT moms relate to their autistic kids. I have a lot of patience and joy in her obsessions and delight in teaching her the “ways of the world” that no one knew how to take the time and calmly and gently explain to me, in exhaustive and obvious detail. But yes, even so, it is hard. And I do it alone. I really don’t want to have my experience invalidated or sugarcoated. It is not wrong for us to feel frustrated. We are not frustrated because of our children necessarily… although some parents may mistakenly believe that. We are frustrated as hell because we live in a society that is not welcoming of autistic people, nor very understanding of how we work. So we are wrongly perceived as an inconvenience and a burden.
Add to that the fact that we live in a society that is very hostile to children and families, and to parenting in general. Many parents of autistic children receive some form of taxpayer funded assistance, agency funding etc, myself included. It is very hard to work when caring for a child that has several therapies a week and doesn’t always reliably get through the school day. So yes, we are perceived as a burden on society. People hate on us. We have no right to take that out on our children. But we have so few supports. I have called agencies in tears asking for help. It is hard to have friends or relationships when you have a child on the spectrum. People are not always sympathetic or willing to work with your needs. Many parents are simply at the end of their ropes. They love their kids, they appreciate how amazing they are and how much they are struggling, and they value them. But society doesn’t. Sometimes even members of our own family don’t understand or care enough to help us.
I understand what you are saying and I am really enjoying your blog. But please understand that a certain amount of the things you mention here are necessary and not bad. As in: yes, if your child is throwing and breaking things, bolting, destroying the house, being violent and having huge meltdowns, being suicidal and depressed, etc, those behaviors need to be addressed. You can call it “fixing” but I don’t call it fixing “autism,” I call that working on specific problem behaviors or issues just as you would in any child who had behaviors that are unsafe or violent. But NO, you do not need to fix a child who obsesses about car parts or train schedules. You do not need to fix a child who enjoys spinning, echolalia, stimming or who likes to watch the same show or eat the same foods as long as they are healthy. The key is separating “fixing” the “problem behaviors” from “curing autism” which is not the same at all.
But yes the problem behaviors DO need support sometimes. Yes, my daughter does need her therapies. Yes, she does require special education and at the moment, medication to help with her more severe emotional issues. (I avoided this route for many years, but I am very glad I finally took it and it does not mean she is “broken” any more than a child with glasses or braces is broken). And yes parents do deserve to vent in a respectful and loving way about their parenting challenges. It IS hard. Please don’t take that away from us. Climbing a mountain is hard too… but I’d much rather live among the gorgeous, rugged mountain peaks than in a boring cookie-cutter suburb any day!
Anyway, sorry if this was long. I do really appreciate and enjoy your blog but just felt I needed to comment here. Yes it is hard. And yes sometimes things do need to be fixed, vented about, and cried about. Not the AUTISM, but specific problem behaviors (usually caused by struggles to communicate or deal with outside stresses) that actually make our kids unhappier than even us as parents. What is asked of me at times is vastly more than the average parent. But the message we need to consistently convey to our children, despite our struggles as parents, is indeed pure love and acceptance. No… not even just “acceptance” but “CELEBRATING” our children. But we aren’t saints and we rarely get the support and help we need.