I saw this posted in a local autism moms support group I’m in on Facebook and I absolutely loved it and asked to share. Enjoy!
I wrote a little while ago to demystify how others might be able to help parents of kiddos with autism. I really wish it was called Autism Action Month instead of awareness because with 1/68 kids affected, I think we are long past spreading awareness and need to get our asses in gear. Anyway, my article may be a little cantankerous and definitely may not apply to every parent (should change the title) but I hope you’ll read or share or think about it.
- Sherri Brown
by Sherri Brown
- My child is not ‘suffering from autism’, they are living with it. Much as we all live with our own conditions and idiosyncrasies, my child lives with autism as one part of who he is. Please do not offer your pity or apologies; I am not sad for me; I am blessed to have this child to love and raise.
- Because my child is the sum of multiple parts, his/her autism is merely one. Please do not focus so exclusively on this one part that your concern with him or communication with me is dominated by that attention. Please try to focus on my child’s abilities, not their disability.
- The adage of ‘when you’ve met one child with autism, you’ve met one child with autism’ should be noted and respected. Although your neighbour’s daughter’s best friend may have autism, your comparisons, anecdotes, or supply of analytics might seem to offer an opportunity to relate, but I, in fact, rarely benefit from this exchange (see #5 for more info). Questions, offers of support, or tangible supports are most badly needed and appreciated.
- If you wish to learn more about my child’s disorder, please do so through the kind medium of questions. And when you ask questions, please listen supportively to my responses. I’ve spent a great deal of time learning about my child’s disorder and ‘quick fixes’ or ‘did-you-read-this-latest -article’ suggestions must be tempered by an understanding that the odds are a parent of a child with ASD has read, considered, and/or tried multiple treatment approaches or resources. Ultimately, like any other person dealing with a health issue, it can be intensely personal. You might not appreciate me sending you articles or relaying stories on diabetes, erectile dysfunction, cancer, Parkinson’s disease, etc., if you or a close family member were living with one of these conditions/disorders.
- I understand that #s 1-4 may be interpreted as a lack of gratitude, or worse, willful ignorance to a massive volume of information on autism. So, I ask that you bear with us as people who are living in a vexing reality of information deficit/surplus. We know a lot about autism, yet sometimes it feels as though we know very little about our child. What will their futures look like? Is this the right treatment approach? Am I overloading my child with too much therapy? My list of questions primarily relates to my unique child and not to the latest therapy or diet. Equally, the story about your neighbour’s daughter’s best friend may be fascinating, but given the multiplicity of ASD expressions and trajectories, I likely am not able to link that story to my own child and it can actually be painful to hear.
- If you wish to help my child, whether a friend, family member or service provider, please do not ignore me in the process. I am this child’s primary support system and we both wish to be treated with respect, with kindness, and with concern as to our day-to-day needs and experiences.
- If you wish to help, please ask me how you can be of help. I often dozens of ways that you can help including anything from the mundane to the complex. And sometimes, I may not need or desire help. Your offer, though, is appreciated so much; more than you know. I also promise to do my very best to make time for you when you need support, too.
- 8. Instead of #7, and you actually endeavour or serve to be a hindrance, an obstacle, a judgemental or ignorant ass, a know-it-all, a belligerent bureaucrat, an evader, or any other manner of person that makes my child’s life and learning that much more difficult, I will absolutely come at you with every resource, advocacy strategy, and support person that I can muster. We can have a relationship based on mutual respect and kindness or you can suffer the wrath of an autism parent. It’s your choice.
- I am still me, and I am not just the parent of a child with autism. I deeply appreciate any reminders from you about this, including offers to socialize, questions about jobs, vacations, or hopes for the future, and during rare opportunities to just spend time together. I thank you for your friendship. I aim to provide you with the same reminders on the wonderful youness of you.
- My family is different, not less. I ask that you appreciate our uniqueness, ask questions where you do not understand, and forgive us our harried sleep-deprived constitutions. Your typical child may not- on the surface - get much out of a playdate with our child, but I promise you that we are each teaching our children the extremely valuable lesson of ‘different, not less’.
Thank you so very much.
To learn more about Sherri Brown please visit Project Bearings. Project Bearings provides a place to discuss advocacy and navigational concerns with respect to autism spectrum disorder and developmental disabilities.