Letter to the parents of autistic children

Letter to the parents of Autistic children

Note: If you are seriously considering suicide, please call the suicide hotline immediately at 1-800-273-8255. If you are seriously considering hurting or killing your Autistic child, please call the crisis hotline immediately at 713-468-5463. 

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To the parents of Autistic children:

We need you.

Sometimes in public discourse, Autistic adults and non-Autistic parents disagree over very important issues that affect each of us personally. Sometimes this disagreement is spectacularly explosive.

But there is no way for the autism and Autistic communities to move forward without creating some type of group cohesiveness. Yes, that means that we will have to enter into painful dialogue and discourse, and yes, that means we will have to accept the validity and legitimacy of the ideas and feelings of people with whom we may disagree. It does not mean that we have to set aside all of our differences, because that would make us self-deceivers. But it does mean that we have an obligation to each other and to ourselves to recognize what Dr. Martin Luther King Jr. called "inescapable mutuality."

Every Autistic child, youth, and adult had parents. Many of those parents were non-Autistic, and some were Autistic, and others were likely diagnosable as Autistic. Many, but not all, of those parents were good parents. Most had very good intentions and wanted what they understood to be the absolute best for their children. Others were abusive, emotionally or physically, and did not care much for their children's welfare.

And parents have always been deeply involved in the conversations about autism. Many times, non-Autistic parents have been the primary and only voice speaking about autism while Autistic adults have been excluded from the conversation. Many times when Autistic adults ask or demand to be included meaningfully in conversations about issues that affect us, we are told that we don't or can't represent or understand the breadth and diversity of needs and abilities of the whole Autistic population.

The truth is that all of our voices are valuable, important, and necessary, particularly when we disagree among ourselves and between each other.

The truth is that we do not merely deserve to be validated, but that we must be.

The truth is that we, Autistic adults, youth, and children, need you. We need you to support us. We need you to love us. We need you to listen to us, and to believe that whatever we have to say, write, sign, draw, or communicate in any other way is of vital importance whether or not you agree with it.

Without your help and love, we might not make it in the world as adults. Many non-Autistic parents worry about what will happen when their Autistic children will age first into adolescence and then into adulthood. They worry about whether their children will ever be able to live independently, and if not, what options their children will have to live as independently as possible. They worry about whether their children will ever be able to get and keep a job, and possibly support themselves.

And the truth is that the best outcomes can occur only when all involved work to give us as much independence and self-advocacy skills as possible. The more we can learn to express ourselves and communicate with the people around us, the better we will be able to advocate for our own needs and desires. The more we can learn to cope with anxiety and sensory problems, the better we will be able to navigate a world that was not built with the needs of Autistics in mind. And you, parents, are placed in a unique position to be able to encourage the lifelong development of self-support and self-advocacy skills.

Sadly, many parents of Autistic children do not receive support from their families, friends, neighbors, or communities. You may feel isolated, alone, and overwhelmed. Most of you did not expect to have an Autistic child, and most of you don't enter the world of autism understanding all of its subtle nuances -- how to negotiate an IEP, how to navigate the confusing array of "therapies" and "interventions," how to plan for the future, how to appropriately measure and evaluate your child's development. Being thrown into a new and unexpected situation can be confusing and stressful. It can be worse when family members refuse to acknowledge your child's special needs or worse yet, blame your parenting for producing a "defiant" or "stubborn" child. Many of you probably cry when you think no one can see you.

But there are some things we want to tell you.

Don't give up. No matter how overwhelmed you might feel at times, we need to know that you are determined to do everything you can to ensure that we have a place in the world as we grow into it. We need to know that of all people, our parents have not given up on trying to make the world a better place for us to be.

Seek support. National organizations like the Autism Society, the Autistic Self Advocacy Network, the Autism National Committee, and the Autism Women's Network have chapters and members across America and sometimes abroad (and frequently have partner organizations and connections to people in other countries.) You will not like or agree with everyone you meet in person or online, but you have to surround yourself with a support net of people -- whether other parents, Autistic adults, or professionals -- who can appreciate the struggles that you and your child face.

But seek support especially from Autistic adults. Even if you disagree with the ideas or beliefs of some Autistic adults, we are people who have been in the same places as your child. We share many experiences, including the ways in which we experience and perceive the world around us. Some of us were head-bangers. Some of us cannot speak. Some of us cannot live independently. Some of us went to segregated classes or schools. Some of us went to mainstream schools. Some of us also have mental health conditions, and some of us have also been tested as gifted. Most of us stim. Some of us can "pass" for "normal," but many of us can't. We are not identical to each other or to your child, but we can identify with your child. We have been Autistic our entire lives, and we have survived the transition from childhood to adulthood. We can offer insight into the ways your child behaves, acts, and processes information from firsthand experience. And we can tell you what has worked and what hasn't when we had to transition into adulthood.

We, Autistic adults, are the continual reminder that what you do as you raise your children will have a lasting impact on the next generation of Autistics. What our parents did for us -- both the good and the bad -- has permanently and undeniably contributed to who we are today. Be the positive force of encouragement and support for your child.

We needed to know that our parents loved us exactly as we are. We needed to know that instead of being obsessed with fixing or managing us, our parents wanted to blaze a trail for us to live and thrive as Autistic people. We needed our parents to understand that it is okay to be Autistic, even though that means we are also disabled. We needed our parents to guide us into your world -- the world of people who aren't Autistic and who don't understand what it is like to live Autistic. We needed our parents to be there not only when times were good and we were coping well, but also when times were bad and we needed more support than usual.

Your child does too.

Your child needs you to know these things, to do these things, to understand these things.

Your child needs to know that Autistic doesn't mean less or worse or defective or broken. Your child needs to know that you value being Autistic. Your child cannot become a healthy and happy adult unless you show with both words and actions that your child is loved exactly as is, and that your child will be supported and guided to as much independence as is possible.

It is not easy to be Autistic in your world. Your world was not made or meant for people like us. This is why we need you. Without that love and support, we might not make it in the world, and if we do, it will be harder than if we had that love and support.

We live in a society where ableism, the idea that people are superior or inferior on the basis of ability or lack thereof, has been thoroughly institutionalized in our attitudes, systems, service provision, and language.

This Tuesday, the sixth of March, the mother of a twenty-two year old Autistic son shot her son and then herself. She said that she was tired, lonely, and unable to care for her son anymore. The article reporting the murder-suicide quoted neighbors and other people who knew the family describing the mother as a wonderful person who loved her son, was under a big strain and depressed, and who had no respite. While I'm not inclined to spend my words vilifying Elizabeth Hodgins, this is not the first time a parent has murdered an Autistic child and was all but absolved for the crime in the media simply because raising a child with special needs can be overwhelming and stressful.

When parents murder children who are not disabled, the public is typically enraged and demands justice. When this happens to children with developmental or intellectual disabilities, it is far more typical to read comments and quotes expressing support for the parent who killed rather than condemnation of the societal conditions and attitudes that drove the parent to such desperation to commit murder of a human being.

When we Autistic adults read this type of article -- and this is only the most recent in a long train of killings of Autistic children -- it terrifies us. When articles reporting on these crimes spend the majority of their words not merely expressing sympathy for the perpetrator but calling for readers to understand that the difficulty of the situation somehow justifies the murder of a disabled person, they also inadvertently send the very powerful message that the lives of people with disabilities are not equal in value or worth to the lives of people without them.

Don't let your children grow up in a world where society devalues their lives.

It is parents, albeit a very small minority of parents, who visit these atrocities against their children, against children who needed their love and support. Thus, it you, parents, who bear the great responsibility to make your voices heard throughout your communities and networks that you love your children as they are, that you want the best for your children even if it means making enormous sacrifices, that you want to be part of the collective community in uplifting and empowering the next generation of Autistic children so that one day no parent will feel compelled or driven to murder and that no Autistic child will grow up thinking of him or herself as defective or broken or a burden.

We need you, because we can't do this alone. Your children need you, because they deserve to grow up in a world where things are better for them than they have been for us. Your children need you to dispel ableism from their world, little by little, so that one day there will be a future where ableism is no longer institutionalized into our society and systems.

Be here.

(This post can also be found on the Autistic Hoya blog here.)