There are people who have had great support from loved ones and friends throughout their life. There are those who have managed to find support to help them, such as finding groups, forums, meetings, organizations, and/or through their religion. I have not had that — my life has been rather lonesome and self-reliant. Though I do not want to say I have not received any support from friends or family, I have. However, it has come at a cost — many times I found that my needs were not actually met. I ended up stuffing my needs out of guilt, shame, or obligation. I had to be ok. I had to get over whatever I was struggling with because others needed more support. Or what I was going through was not “as bad” as what someone else was going through.
It felt as if I was either ignored or that I was on some sort of check list for them, and once they felt I was ok, they could move onto their next thing.
It feels very invalidating and because of this, I’ve grown accustomed to doing things on my own. I had to learn as a child to take care of myself and others. My emotional needs were not a priority to the adults in my life. My basic physical needs were met, but many times accompanied with guilt for needing anything in the first place, unless it was the holidays/birthdays. During those times, I was showered with gifts, but there were also times when I hated getting gifts because I knew that they would only be used against me at some point, if I did something wrong or if I asked for something during the year. I am not sure why I expected more support from my family when we discovered that Daniel was Autistic. I am not really sure what I expected at all, other than wanting to talk to them about it, for them to want to learn about it, and try to understand it along with me.
I did expect for people to listen to me, allow me speak about my concerns, and share in my enthusiasm at discovering answers.
I didn’t get that, mostly I received silence and condemnation from my spiritual community. I felt ignored and isolated. I felt as though Daniel was nonexistent to people. I felt alone and questioned myself on many occasions. What if I haven’t prayed hard enough? What if I wasn’t doing enough good in the world? What if I was causing my son to be Autistic? (Technically, I guess you can say that I caused my son to be Autistic since I am too. ;-)) Why did my family refuse to talk about it? Why did people think it was evil? After years of feeling such tremendous fear and pain, I noticed a pattern: everyone in my life was being consistent — except me. The reality of my life is that I have been my strongest and most consistent emotional supporter. Many of the things that I have accomplished have been done on my own. This does not mean that people have not been there and provided the means, resources, or encouragement, but the main source of support that I have longed for has been emotional support.
That means a person’s time, listening with nonjudgmental ears, an open heart and mind, people who make it clear that what I am feeling and who I am matter.
That comes from relationship and connection – that type of support I have had to provide on my own. It took me understanding that in order to move forward in seeking out how I define and need support. I had to accept and understand myself before I could look to others. I had been doing it my whole life, but I never trusted it. I had this lurking feeling that somehow I was wrong for being able to support myself. I watched as people would have people in their life rally around them and no matter how hard I tried I could not keep friends or have that same connection with my family. I did not know what support looked like for me, but I knew I had not had the same kind of support as I witnessed in social settings. Even if I did receive any sort of emotional support it was invalidated by my confusion of actions/words not being consistent, abusive relationships, and/or constant anxiety and depression.
Many times the things that people did as acts of support I found hurtful.
I am different from many people when seeking emotional support. (or maybe I am not?) I do not want physical hugs, I do not want to be touched, I do not want to hear “I love you”, I do not want to be surrounded by people when I am seeking emotional support. It helps having distance with people for me, but I desire to know that they are there. My goodness what do I want?? How is anyone supposed to know? That is what I am still working on, but I can say that it is important to me to feel validated and heard. I also, grew up living to support other people. I grew up trying to make everyone else happy. If I made sure they were happy then, life was calm. If they were not then, life was chaos. In doing this, I learned that my emotions were less. Throughout my life when I had tried to express my feelings, share the emotions that I was feeling seeking that emotional support I felt invalidated and even felt shame or guilt for feeling them.
I learned over time to stop sharing all together.
I learned to stop trying to ask people for support. My ways were not their ways and I was expected to feel grateful and satisfied with the way they gave me support. When I attempted to share with David I was encountered with similar responses until I finally gave up, as I had done with every person in my life. Again, I found myself relying on me for my emotional support. When I felt too overwhelmed I found myself stuffing my emotional needs. I have done that my whole life too. I have the ability to live long periods of time ignoring my emotions or dismissing them devoting my energy to everyone else around me. However, this is very damaging and the emotions eventually come blasting out through meltdowns or I internally implode into shutdowns. This is another reason why I started a blog; I was desperately seeking support – any support.
I wanted someone to be there and let me know that I was not alone in my feelings.
Over several months David and I have learned to work on our emotional responses. We understand that they are ok, as long as we are not manipulating or trying to cause harm to the other person. Understanding emotional responses has helped me in my expectations with others. I have more awareness of trying to understand them, I am listening and observing with new insights because I now understand that people react for the most part because of their experiences. In observing people’s emotional responses, I have been able to discern what types of people are good for me to try to establish relationships and those who cannot be in my support network. Before I had allowed everyone in then, I eliminated everyone from my circle; now I am able to see a bit clearer and know that there are some toxic people out there for me. There are people who I connect with and are good for me as well. At some point, I had accepted that I was wrong if I did not fit into the “autism mom” groups.
I felt wrong if I did not fit in with my fellow Autistics.
I felt wrong for not fitting into my family. I felt wrong for not having friends. All of that was a motivator that caused me to force myself to try to fit in only to feel even more isolated in midst of people. I am not going to lie, it hurts. Even as I type these words out my heart hurts and tears kind of fill my eyes. However, I need to go through this because it helps me to understand that I cannot just pick anyone to be my emotional support. I cannot have people who do not build into me emotionally and/or siphon me for emotional support — they have no desire to have my kind of support. I have had people come along and help me, love me, hold me up, but not for long and like I said earlier, it usually came with a price. I am thankful for those people, but I had to do the work. I was not able to share with them honestly without consequence.
I sat in silence much of time because:
- I did not know what I needed.
- I did not know what support actually meant.
- I was so used to doing things on my own that I did not think about it.
- Past experienced proved time and time again that people only gave me the support they wanted or assumed I needed.
- Past experience gave me the perception that if I needed support that I was weak.
There are more reasons, but I think you get the point.
After struggling with feeling so alone with trying to find help for Daniel and trying to understand autism, I gave up on people in my “real” life. I looked to the internet to find others like me. I sought people who understood and appreciated my challenges, pains, and talents. I have slowly built into myself, but much of that came from the positive experiences and acceptance that I have received online. Through my virtual life I have been able to gain a more positive perspective about myself through the life experiences that others have shared and some of the friends that I have made online and continue to make. I know that I can go online and find people who have gone/are going through what I have or similar experiences and that helps me feel connected.
I can only take so many social encounters.
However, by cultivating an online network of people, I feel supported, understood (most of the time), and vulnerable, but the relief that comes from knowing others understand what I am sharing is worthwhile. Even when people do not understand but simply “like” or give a virtual hug or something, it helps. I try to do the same for others and support them as much as I can. I think even if someone does have a strong support network with family and/or friends, they can still have moments of feeling alone and misunderstood. Reading and sharing with our community has been a large part of where I find support.
I am using support in the context of,
1. to give aid or courage to
2. to give approval to (a cause, principle, etc.); subscribe to to support a political candidature
3. to endure with forbearance I will no longer support bad behaviour
4. to give strength to; maintain to support a business
I am thankful for the passion that ripples through and the tenaciousness of the Autism community.
It keeps me motivated to stretch my mind and change for the better. It helps me realize that all of us need support differently. During our Autism journey, we have needed a lot of support financially, physically, and emotionally. People have come and gone who have helped us with each of these. However, I found that I am capable of providing a lot of that support for myself. But I definitely need people in my life and I do need encouragement, reassurance, validation — I still need support. I started to create a support network that fit for me. When things seem to be going downhill and crumbling around me, I have found that being able to go online and to see this network flowing it gives me hope. I do not always communicate directly with people, sometimes reading their words is enough to give me a boost. Then, there are other times when I feel left out and disconnected.
That disconnect has enabled me to see how I can support myself and communicate how I need support from others.
I am still learning, but I am getting better. It is interesting that through this past year when I stopped seeking support or understanding from family that they have slowly started to talk to me about autism. I still do not expect anything, but I am happy that they are not being silent. I no longer feel that Daniel is being ignored. I feel validated at times when they ask me questions and no longer dismiss me or change the subject. I understand that I cannot seek support in the ways that others do. I will not seek out groups anymore — it is not for me. I will not discuss on forums — people can misunderstand so easily. I will not try to be friends with every ASD mom — some may be a good fit and others may not. I will continue to seek support in the ways that suit me. There is nothing wrong with how I need support.
I see with more clarity how to ask for the support I need from the people in my life.
I do not look to others to provide my emotional needs that does not mean that I do not need it. It means that I am better at seeing what emotional needs I have, how I can help myself, and when I need to ask others for their support. I accept what they are capable of giving and that is enough for me. I accept that people need time to process. I think that some of the people who seemed so unsupportive in the beginning were in shock, denial, or were confused and misinformed about autism which, made it difficult for them to know how to respond or support me. I do have hurt and feelings of abandonment, but I am healing and I can understand.
I actually think that overall learning how much I can do on my own has been a real eye-opener.
It has built into my self-esteem and gives me the confidence to keep stepping out trying to achieve things I never considered before. I do not deny that I feel incredibly lonely at times, or that my mind wanders in sad thoughts about not having friends and family like other people do, but maybe it is all about timing. Possibly, I needed to accept myself and learn more about relationships before I could establish real life relationships? We’ll see. Each person has to define their needs and how to actively gain the support they need — some of us need help in learning how to do that.
- The Supportive Spouse: How to Get the Right Kind of Emotional Support
- Emotional and Social Support
- How to Give Emotional Support