Parents with ASDs; please share your stories!
I'd really like to hear from parents on the Autism Spectrum; if it acceptable I'd like to ask you some questions for my blog. (I am obsessively looking for things to add to it, LOL; especially in April when people are looking for Autism related info)
I think too often people assumes autistics can't be parents, and I know that's not true. So it would be great to hear from some parents on the spectrum. :)
Either message me here or e-mail me at autielady@live.com ; both are fine or post a story you'd like me to post here for the article
I'm a mom that is on the spectrum and have one son diagnosed, and one that is probably somewhere on it, but not diagnosed. I love finding other ASD parents that know where I am coming from, or where I am trying to go...
Oh, goodness, Sharon yes that would be important to make questions! (duh!)
1) What is this biggest challenge(s) of being a parent on the Autism spectrum?
2) How do you overcome that challenge(s) ?
3) What do you wish other people would know about parents on the Autism spectrum?
4) Is it hard to relate to other parents not on the spectrum?
5) What do you think communities could do to support parents on the Autism spectrum?
(And anything else you want to add, of course you can)
Hi there AutieHamsterLady,
I'm a parent on the spectrum, of kiddos on the spectrum. I'd be happy to answer your questions. I'll send you a message. :)
I'm responding here, as I hope to see other people's responses to your questions.
1) The biggest challenge is that I'm noticeably eccentric -- not extremely so, but enough -- and this can tend to make things a bit dicey with IEP team meetings and social workers (long story there). I tend to be blunt and stand my ground rather stubbornly, good qualities in some ways, but if one is odd, perhaps not so good when diplomacy is called for.
I've also struggled with helping my kids with some of the social situations they find themselves in --- particularly with my NT kid, who is already a bit better at navigating social situations than I have ever been. She's awesome, so I find myself learning from her.
Another problem I have is that I have a verbal stim of yakking too much when I am anxious. This can be quite annoying for others, so I need to watch this! For some reason, though, I don't do this with my kids. Instead, they talk my ears off, and I love it.
2) I overcome these challenges by going to psychological counseling once every two weeks. I run ideas and concerns by my counselor and we practice ways to go about things. As a teen, I took private and school acting lessons and participated in many productions, and I think this helped me tremendously. I was able to participate in college and grad school and go on to having a professional career, including getting promoted into management and adult teaching.
About the yakking, I find if I empower my friends and others to remind me that I am speaking too much about something, then things go better for me. I try to manage this for myself, but sometimes I do need reminders.
3) I'd like other people to know we might appear a bit on edge, overly blunt or flakey at times, but we are smart and resourceful and can parent lovingly and effectively. I'd like people to know that we do have empathy and that our kids become our special interests, so we can pour all of ourselves into doing the best job possible.
4) I don't think it's as hard for me to relate to NT parents as it is for them to relate to me! My acting lessons taught me how to put myself in their shoes, how even to pretend to be like them so that I'm comfortable to be around. However, if I am having a bad day and I show sensory distress, for example, parents can tend to come to all manner of conclusions about me that can be problematic. Any slurring of my words (which happens if I'm tired or too hot) and people can assume I've been drinking, for example, and I don't drink at all. During a root canal, I began flapping, which doesn't often happen to me, and I could see that the surgeon and his assistant were quite surprised!
I think sometimes it can be hard for me to feel motivated to speak about the things that NT parents speak about. I have many friends in the autism community, and the NT moms can tend to speak about "cures" and I find myself getting ticked off about it. I'm learning to live and let live (because I know they are great parents and really enjoy their kids) and not react to this so much, to focus instead on what I can say that is positive that might influence their thinking in some way. I'm not really into make-up or fashion or home decorating, so I try to express interest because they are my friends, so they don't think I am dismissing them, and then move on to conversations that interest me more. I'm also learning that it's okay sometimes to just sit back and listen in. Because I am a writer, I do enjoy people watching.
Another thing I can tend to struggle with is equal reciprocity in relationships with NTs. I tend not to need as much interaction with my friends and to require down time to recover in between exposures to them. Although I do reach out regularly, sometimes my NT friends can express confusion and concern about the frequency with which I do this.
5) I think communities can support parents with AS better by facilitating training and disseminating information about AS that isn't sensationalized or overly stereotyped/negative. Teachers, police officers, social workers, and other public servants need to know that we are capable and willing to work with them!
In our case, we required in-home supports due to some of our son's behaviors. It was assumed because my husband and I are eccentric that we created these challenges. While it is true that training helped us to help our son, the challenges we faced were not dissimilar to those faced by NT parents in similar circumstances.
So I think it is very important for community agencies not to overreact when encountering us and not speak down to us as if we are incapable of learning.
Awesome forum.
Hi, new to this site. I wanted to comment on this:
1 & 2. Challenges of being a parent on the spectrum, and overcoming it:
My kids are 2 and 3, and the older is PDD-NOS. My younger is NT. Both challenge me in different ways.
I like to say things once and have problems understanding that they are only toddlers and are not going to listen. So if I say "Don't touch my IPOD and get off of the chair (which is being used as a stepladder to get my IPOD,) I expect that they should hear the instruction and follow directions. My older child, in addition to being a willful child pushing normal limits, also does not attend to people talking. 9 times out of 10 he doesn't even know I've given a command. So I get angry and he doesn't even know why. This is an all-day problem. Thankfully he has been given full day preschool for his issues, so it gives me a break from the constant destruction of my house and stuff. Additionally, its difficult for me to raise him and see myself in him. Part of me feels enormously guilty about having him, knowing the pain he will go through in life, not being accepted until he finds peace with who he is. I find myself apologizing for him a lot too - sorry he doesn't want to participate with your child, sorry he keeps opening and closing your doors, sorry he doesn't respond to your questions -"hi, what's YOUR name?" "How OLD are you?" (in that fake high pitched voice that you use to talk down to children) The apologizing is weird for me because I feel like I am making excuses for him - like I must be ashamed of him or something. Sometimes I am ashamed, because I feel like its my bad parenting, but most of the time he amazes me. If the world could see what I see, they would ooo and ahhhh over him (like they do for my daughter.) Just turning 3 years old he could use the mouse on the computer, browse through youtube videos of cartoons, and switch between user accounts. Sometimes its painful because I remember feeling like I had talents, and yet I watched everyone else getting acclamades for the great things they were doing, while I was ignored. Since then, I have found out that people thought it was weird that I never smiled and always looked so serious. I guess that is not something that is looked fondly on in our culture. I'm really worried for my son because he keeps his feelings on the inside like I do and does not need to talk to think.
For my daughter, its different. She is typically developing, and she plays normally with toys. That part is wonderful. I love watching her do pretend play - something I missed out entirely with my son. The downside to having an NT daughter is that she wants to Talk - ALL OF THE TIME. She wants to chat and show me things and she contantly is saying "Mommy, blah blah blah" - sometimes over and over because I don't acknowledge her the first time. I do talk with her - but sometimes I just need to be alone with my thoughts and toddlers don't allow much time for recharging. Its extra hard for me to be constantly interacting with other human beings. I have very little time for my special interests. Many days I feel depressed and guilty. Depressed because I feel like my life is over and I exist only for the children. Guilty because by having children, I have condemned them to a life with an autistic mother. Sometimes its good for them because I am creative and we play great games together. I don't really care what others think of me as we are singing in the parking lot or dancing to the music at the supermarket. But the other times - when I am unable to function because I need to think about my thoughts and the children need their mother - those are bad times for all of us.
3) What do you wish other people would know about parents on the Autism spectrum?
We need support. Help. In the form of organizations that have resources to give us support groups, and respite care so we can recharge.
4) Is it hard to relate to other parents not on the spectrum?
Its hard to do mommy groups and stuff like that. Many NT parents also miss their previous lives. They compensate by turning mommy groups into a way to relive their teen years. They gossip and talk about the latest fashions and appear fake to me. They also miss talking to other women, so they gobble up the opportunity to talk to other women - about nothing in particular. All over the world, there are millions of moms at mommy groups, having the exact same conversations - oooo, the weather is nice today, isn't it? where-ever did you get that fabulous Calvin Klein mitten and hat set for Junior? That pocketbook is simply fabulous - but I could never spend over 300 on a handbag. Mine is a diaper bag and only cost 200. Maybe after the children are toilet trained I'll splurge on the 300 dollar one.
Ugh.
I have no patience for niceties. I do miss adult conversation, but not for its own sake. I like to talk about actual issues and problems and ideas - things that I can ruminate on and possibly create new ideas from. I would be inclined to go to mommy groups and ask someone about my child's discipline issues and ask if they have the same problems. This usually gets horrified, uncomfortable looks and they quickly make an exit. These are the issues that really matter, not the weather! I don't understand why people don't want to address them instead. Are they that afraid of going past appearences? Or are they more put off by my serious demeanor?
Yes. Its hard for me to relate to NT parents.
5) What do you think communities could do to support parents on the Autism spectrum?
Respite services
regular support groups
aspie mommy meetups
This is a great way to network for your ideas. Do you have specific questions you are wanting to address?