Autistic Perspectives on Parenting

Question: What kind of parent support helped you or would have helped you while growing up?

Aditi Gangrade: Parent support that helped – my mom let me be. If I didn’t like doing something she wouldn’t force me to do it. Due to undiagnosed autism none of us knew it was sounds that hurt me. I would get really upset, cry and get angry sometimes on important occasions. She would give me the space I needed. 

When sounds hurt me she would try to ensure there were no loud sounds of utensils or doors. Hugging her during meltdowns felt good. I would usually come home after school and cry. She held space for me, made my safe food for me, didn’t judge me, and accepted me unconditionally.

Navin Israni: Someone who validates my emotions and helps me understand them. I don’t want to feel invalid for feeling certain emotions. Often times I can’t even name such emotions because I never received training in emotions.

Preeti Dixit: I felt and still feel extremely supported by my parents. Some of the things that my parents did that helped me were –

• Treating me like a person to be respected
• Allowing me to be myself and respecting my individuality
• Not expecting me to be like them or others
• Not comparing me to others
• Not forcing me to do things when I didn’t want to do them
• Trying to understand why I didn’t want to do something instead of scolding me
• Explaining to me why I needed to do something instead of ordering me to do it
• Believing me when I said I found it difficult to do something and supporting me instead of shaming me
• Encouraging me to think independently and make my own decisions
• Teaching me to take responsibility of the consequences of my actions
• Not making fun of my mistakes but encouraging me to learn from them
• Making me do things which I was capable of doing on my own
• Helping me to do things which I was not capable of doing on my own
• Encouraging me to learn new things and not be afraid of failing
• Not scolding or shaming me for failing
• Encouraging me to keep trying and not give up
• Accepting me for who I was and loving me unconditionally

Navi A: Now my parents know I’m autistic. I think it’s really important to listen to what is actually needed. Sometimes I feel like my parents are taking trouble to do things I didn’t really need. My ground rules now are not to do something unless I explicitly ask. They still often do stuff I don’t need that I feel guilty about them taking effort for. I was in my 30’s before I found out I’m autistic. When I was a kid, they did a lot of things that were great for an autistic kid.

1. They got me an encyclopaedia. I’ve read this several times over. There’s a separate group of books called young scientist with lots of experiments designed to teach kids a heck of a lot of scientific concepts. I’ve done nearly everything here as well.
2. I had a lot of questions about science, people, etc. They took the time to answer these as if I’m an adult even if they often remarked if I’m really thinking of these myself. A lot of my conversations with them are about science and sociology from like age 7 onwards.
3. They gave me space when I failed and didn’t pressure me into completing college, they trusted me to figure life out (while planning on supporting me throughout my life in case I ended up doing nothing).

What I wish they did? Read the books I gave them and watched the movies I told them about. The understanding would help a lot. Basically, they stumbled into a special interest of mine and gave me enough tools to explore it by myself. It should be noted that autistics can have interests that span the entirely of human experience. Just expose them to things and support them in what they enjoy.

Aditi Bhatnagar: I have very supportive parents but I still feel unsupported. Or I would say I have friendly, modern parents who all my friends liked and wanted. But I still kind of feel alone. Couple of things I wish my parents did –

1. Believing me. I think since I was born I had sensory issues. I couldn’t touch certain things, walk on certain surfaces or stand certain sounds or lights. My parents could never understand. Even if I communicated clearly that I feel my diaphragm will burst if I sit and listen to dholak in the bhajans. Or the dhols in weddings, my parents couldn’t believe me. They would laugh over it. Find it funny. While I couldn’t sleep, relax or just be. This happened on several things. And still happens – they call what I have aliment of rich people. And they are very rooted folks so, basically, I can’t get any accommodations while I am with them. I am not sure if my rant makes sense.
2. Not to narrate what they think went wrong. My parents would narrate everything I did with an opinion – “I think you need attention so you are dancing in front of so and so”, “I think you are so stubborn”, “You are so messy” when I was clearly suffering from executive functioning.
3. Not rain on my parade thinking if they praise their child it will make them over confident. I have no idea but somehow my parents were uncomfortable with my confidence. I think it is not right. They kept thinking that they will mould me into someone arrogant and bossy and haughty if they praised me or acknowledge my success. I guess it was something about my direct communication that bothered me.
4. Teach me how to fail gracefully. Or accept failures. My parents expected success all the time. My son has now taught me how to evolve through failures and hardships. I never got those crucial lessons from my parents.

I guess it is an impasse between my modern-friendly parents and me. I want to add one more thing. To support autistic children – keep away from perfection. Encourage your child even if they are not perfect. Let them find joy in a hobby or two without expecting them to be good in it. One, it will support their mental health. Two, autistic brains keep growing and you never know when they take leap to perfection.

I am an awful singer and painter. My sister was very good at both. So, I naturally didn’t sing. Thanks to an older cousin who taught me to accept my voice. So, using my very awful singing I navigated through my postpartum with bare minimum episodes of depression. Now, I know I am parody master.

Question: Are there any tips for us as parents? What are three things that you would like to identify where you felt that your parents went grossly wrong?

Navi A: I think the only thing you really need is to believe your kid when they say something bothers them. To inculcate in them that there’s no need for competition, there’s no such thing as weak, just people who need support. You need to live this, so no talking about beggars on the road or family members on the phone who are lazy, etc. They shouldn’t hear the word lazy from your mouth ever in any context. 

Be there for them to discuss things, whatever they’re interested in and want to talk about. One of the things that stopped me from going to my parents about being bullied is that I felt it was a logical problem, teacher says don’t hit kids smaller than you and it was a smaller kit hitting me because he realised I wouldn’t fight back. So, what advice could parents possibly have about logic problems that were making me feel this bad? It should be noted that while my parents tried their best and continue to try in often wrong ways. I appreciate what they did for me and that they did care even if they didn’t always know the right thing to do. Accept that you will make mistakes. You will want to model that mindset for your child as well.

Gauri Joshi:

1. The most important thing – and I know this will sound mean – is to try to stay away from “traditional parenting methods”. This means things like expectations that a child will follow commands because they are the child and you are parent. Many autistic folks do far better if given age-appropriate logical reasoning. Or comparison with peers as a form of encouraging.
2. Be your child’s advocate even with your family. There is limited understanding in society of what is best for our kids, and it becomes the parent’s job to educate. It doesn’t always work. But you will need to stand up for your child’s needs – it may be no hugs without consent, or don’t tease because child takes things literally, or give child ear defenders/dark glasses/time-outs in social settings so they don’t get overwhelmed, or don’t stop stimming. Your child will learn from this to advocate for themselves.
3. Give them the mental and physical space they need, and age-appropriate privacy. This also means encouraging them to take their own decisions and choices where they can.

Navin Israni: Validate your child’s emotions. Tell them what they’re feeling because Alexithymia really sucks. We often struggle so much because we don’t know what are feeling. Help them self-regulate. Today I am obese because my parents didn’t teach me to manage my stress and to self-regulate when I am overwhelmed. Get them into journaling their thoughts and meditation. And give them privacy when they do it. These three things can help improve our mental health.

Preeti Dixit: I would like to mention three things that my parents did that I’m really grateful for:

1. They never compared me to other children. They never made me feel I should be anyone but me. They didn’t say things like, “Look at that child”, “You should try to be like that child” or “Why can’t you be more like that child?” They made me feel secure about myself by showing me that they liked me for who I was and didn’t need me to be anybody else.
2. They praised effort over results. They never made me feel like a failure for not achieving a goal. They made me feel proud of the effort I had put in and told me that that’s what mattered – that I had tried, that I had put in the effort, that I had given it my best shot. This allowed me to try things without the fear of failure and disappointing my parents. This was really important because I was an anxious child and afraid to try new things. Having to worry about disappointing my parents on top of that would have made me not want to try anything at all and miss out on a lot of things.
3. My parents always gave me a reason and an explanation for why I needed to do something or not do something. Without that I would never have been able to “comply” and “obey”. I could never do something just because I was told to do it. I needed to understand why I needed to do it and the reason had to make sense to me. I “listened” to my parents only if they made sense to me otherwise I didn’t. I’m really glad my parents took the effort to give me explanations and make me understand. I would have been extremely bitter if they had expected me to just follow their orders without reason.