I have been different from other people for as long as I can remember. Over the years, I have had many different diagnoses, opinions, and treatments that were not quite right. My parents have tried to get me help since I was a little kid, but no one really knew what to do with me.
I was a smart but strange kid. I didn’t understand things, especially people. I didn’t fit in. I thought school was dumb. I thought a lot of things were dumb. Turns out a lot of them are, but many were not as black and white as I thought at the time. It wasn’t until I was an adult that I began seeing shades of grey.
During my early years of school, I barely talked at all and spent a bunch of time in the principal’s office. My teachers and school psychologists thought I could be normal if I tried harder. If I would just be like the other kids, they would like me and wouldn’t be so mean to me. I just wasn’t “applying myself”.
It wasn’t until 5 years ago that I finally learned what is “wrong” with me. I have Autism. I sometimes wonder what would life have been like if we knew that when I was 3 instead of when I was 38? It is hard not to think of all the “if”s.
Would I have been a happy kid? Would I have finished college? Would I have never wanted to kill myself? Would my parents have had a happier and less frustrating life? Would they have had support and not had to figure everything out for themselves? No way to know and generally a bad place to take my brain.
For Autism Awareness Month, I would like to write about autism from the perspective of the people who are closest to me. They have been there for me through the best times and the worst. I think that acknowledging and documenting their experiences is an important part of increasing autism awareness and would like to thank them all very much for answering so honestly and thoughtfully.
I asked 5 questions each to my partner Karen and my parents Gloria and Ron (M&D). Here are their answers:
1. What, if anything, changed for you when you found out I am autistic?
M&D: What changed for us when you were finally diagnosed was relief and sadness. We were glad to hear that they finally put a label on all your symptoms and you did not have a life threatening disease and that this condition was somewhat manageable. We were also very sad and disappointed that this was not diagnosed earlier in your life because of all the pain and suffering you incurred unnecessarily for so many years. As parents, your pain was our pain.
Karen: So many things changed – maybe not immediately but I’d say quite a bit in that first year – more than I could probably put to words here.
A lot of things started to make sense in terms of why you do some of the things you do. I remember looking it up in the DSM (which I use regularly where I work) and feeling like all the puzzle pieces had clicked into place. I never thought of autism because in the DSM it’s listed as a condition that is diagnosed in childhood and I work with adults so it never occurred to me. I don’t think I had heard of Asperger’s at that point.
When I say “some of the things you do,” I mean specifically – rocking, flapping your hands (or “stimming”), echolalia (repeating words or phrases), getting “loud head” – i.e. becoming sensory-overwhelmed, having difficulty with certain social situations or people. Also just some things about what you like or dislike make sense in terms of sensory input – your love of soft things and clothes, your dislike of certain tastes or textures or lighting or sounds.
Another thing that changed is that I had a better context for understanding some of the ways that you see the world. I feel like we went on a journey together as we looked for other people on the autistic spectrum and in particular, resources. Basically it opened a whole new way of understanding who you are and I think that brought us a lot closer.
2. What do you see as the positive aspects, if any, of my being autistic?
M&D: After reading about Aspergers, and being told that most sufferers of this form of Autism are highly intelligent (something that we always knew), and could really focus on one thing at a time, we were glad that you were putting your talents to good use. We are so proud of what you have been able to accomplish up to now and what you will continue to accomplish in the future. We are also in awe of your writing ability. Your communication skills over the internet are beautifully written and very enlightening and educational.
It makes us very happy that you chose not to look back with “what if?”. Being able to look toward the future is a very positive attitude and one that will prove to be very fruitful.
Karen: The biggest thing for me is that you have really changed the way I see the world too. I’ve had to do a lot of my own soul-searching about my learned and ingrained ways of communicating with others, social conventions and norms, the ways that we neurotypical people, or “NTs” take for granted our skill with non-verbal communication. It has made me less afraid of being straightforward and honest because with you, I have to be, and not just because you are my life partner. I can’t expect you to just know when something is wrong or when I might be feeling a certain way – the way other people in my life might be able to tell. I have to tell you and be up front about it. Ultimately it has made me see how much gets covered up – for various reasons – by the neurotypical world – and how important it is to uncover those things.
You are funny and silly and I find, for example, the echolalia endearing. I hope that is not insulting to anyone on the spectrum who is reading this. It makes me laugh but not because I’m making fun of you but because there is a certain whimsical and playful quality to that, and to other things you do that I just love. It’s freeing to me because I get to be playful with you.
I love your love for computers, coding, geekery, gaming, podcasts, screencasts, etc. You get so into it and I think that the computer has brought new worlds to you, including having your own business.
I especially love that we don’t need to constantly talk to be comfortable around each other. I talk all day for a living and I like to be able to come home and we can both be doing our own thing in the same room without having to have constant conversation and both be totally content and relaxed.
I like the way you are and who you are. It’s hard to say what “part” is the autistic part and what part is just who you are because I think it’s inseparable.
3. What kinds of challenges have you faced because of my autism?
M&D: Now you’re asking me to tax my brain. Thirty-eight years is a long time to remember, but I do recall there were many incidents and challenges. Keeping you in line at school was probably the most challenging because it involved many years. Trying to get a diagnosis was very frustrating. I always had a feeling of guilt that I wasn’t doing enough. Aspergers was an unknown back in the 60’s. No one ever suggested Autism or any form thereof because basically you were functioning (or pretending to function), almost normally. You didn’t have a lot of friends but you managed a few (although some of them were very questionable at the time) you enjoyed their company. You were basically anti-social and that hurt me because I was such a people person. We were disappointed that you never finished college but then again you never thought many of the courses were necessary and what would they do for you later on in life. We tried to convince you to stick it out, but to no avail. I think the college experience was a good one because you managed to make friends and had some fun.
Karen: Probably the biggest challenges are social interaction and travel. You are sometimes uncomfortable in certain social situations, which means that at those times, I go and do things on my own with other people. This works out most of the time – although as you know it took a bunch of years to figure out pretty well what works and what doesn’t for both of us. I imagine there will always be situations that come up that we need to work through. Sometimes there are places or events that I go to and wish that I had my partner there – and that you would be able to enjoy them. Sometimes it takes a lot of energy to work things out or come to a good compromise.
Travel can be difficult because it’s hard for you to deal with, even though once we get to our destination, it’s usually fine. It’s a lot of stimulation and energy-drain and I sometimes get impatient for you to decide whether we or you are going to go somewhere.
The energy thing can be hard in general because sometimes I have more energy than you to do multiple things or multitask and your run out of it quicker.
4. What types of communication have worked best and what types of communication have worked the least with me?
M&D: Being your mother, I often felt that I had this inner connection to your thoughts and feelings. There were many times you called me a witch. When I get the feeling that something is not right I call and I am usually right. During those times I feel your pain and frustration and wish that I could just hug you and tell you everything will be better. I think the positive approach always worked for me with you. I try not to ask too many questions when I think you are having a bad day. When asked, I try to answer your questions with honesty and an up front answer. I truly believe that since you have been diagnosed, your communication with the outside world has improved. Knowing what is wrong always helps to prevent bad things from happening because there are medications, explanations and advice as to what to do. I believe that the knowledge of knowing that you are not alone and there are so many other people suffering from the same thing has made you a better person and improved your outlook on life.
Karen: Like I was talking about in my earlier answer, being honest and up front works best. It’s not always easy – it comes way more naturally to me than it did before we got together. It can be scary but ultimately it always brings us to a better understanding of each other. It still makes me squirmy sometimes but it has made a world of difference in all areas of my life, not just in our relationship – which by the way is another positive thing.
Me saying to you, “Why don’t you just….” does not work at all. It makes us both frustrated. Sometimes I forget that if you could “just” do something, you probably would.
5. Is there anything you have learned that you would like to share with other loved ones of autistic people?
M&D: I have learned that everyone walks in their own shoes. You are who you are, and being happy doesn’t mean that everything in life is perfect. It just means that you have to learn to live with the imperfections. Remember, all is not what it appears to be. You have a great support team with Karen, family and friends. To me and Dad you serve as an inspiration in being able to accomplish what you have until now and what you will continue to accomplish in the future. We love you and we will always be there for you.
Karen: I have learned to be more patient and more honest in general. I have learned that brains are fascinating and mysterious things and that everyone’s brain works differently. I have learned that people on the autistic spectrum have as much to contribute to the world as NTs do. I have learned that people on the spectrum have so many things that they can teach NTs: about different ways of communicating, of seeing the world, of showing love and affection and about the nonsensical nature of many of our social norms. I have learned how much NTs take for granted about how we communicate without words – and how confusing and bewildering this can be for people on the spectrum. I have learned that people with autism are lovable.
17 thoughts on “Perspectives of Autism from My Family”
Great to hear from your significant others.
I have a little boy that was recently diagnosed with Aspergers. After a 8 year struggle the pieces are falling into place.
Your words are powerful and so helpful.
Peace to you and your family!
Wow – where to begin? First, I must say, thank you Lori for sharing this with all of us. What a fantastic idea to do so as your personal contribution during Autism Awareness Month.
I am amazed at how similar your childhood experiences were in comparison to mine. Although, we are the same age so perhaps some aspects played out the way they did due to the times we lived in during our rugrat years.
I always feel like I fit a little more snug inside this world when I find my experiences are similar to someone else. It’s comforting, because once I feel that safety, I’m free to fly off to the moon yet again – and I will!
Mr. & Mrs. Berkowitz, thank you for sharing your experiences as Lori’s parents. My mother has echoed so many of the sentiments you shared when she reflects upon my childhood. I got the goose-bumps 3x while reading your comments. It’s easy to see why Lori is the beautiful & fantastical woman that she is today. She definitely came by those qualities honestly.
Karen, I am speechless. The amount of understanding you aspire to when it comes to complete acceptance makes it easy to conclude that your understanding of human differences is instinctual.
I felt you speaking from your heart yet strangely it felt grounded as well. I’m going to go out on a limb here, and surmise that you could chug back a Brewsky with the neighbor, and have tea with the Queen at high noon? You get it!
Your honesty is refreshing Karen. It makes it easier to be human and still feel comfortable in ones own skin when around no nonsense people. Your willingness to understand the many shades of diversity is testimony that if anyone really wants to do the same – they can.
Virtual Hugs to a fantabulous family unit. I’d let any of you ride in my spaceship any day. (Lori – please let your parents know I’m joking… I don’t have a spaceship – yet.)
Wonderful, Lori (and family!)–I have too much in my head and heart right now to express, so I’ll leave it at that. I have posted a link to this on Facebook.
Thanks so much for the kind words! I am so proud of Lori for posting this. I’m also so proud of and grateful to Lori’s parents for participating – it means so much to Lori that they would let their personal thoughts and words be published – and for being so supportive of Lori and of me.
What a great report…you took the words right out of my mind and mouth!!!..Thanks for sharing and best wishes to you and your family!!!
I have to admit that I just feel – jealous, for all the support you have through parents, partner, and friends. That’s something that I never had, but think it’s wonderful that you do.
Thanks so much for all the nice words everyone! I have wanted to post something like this for a while. I wish everyone was as lucky as I have been.
I am hoping that all of the online, local, and national/international advocacy that has been going on in the autism community will eventually lead to resources that are available and attainable for everyone.
Thank you, your parents, and Karen for sharing such powerful insights! This post was a great idea!
Hello Lori! I found your post via the Autism Women's Network. Like you, I was diagnosed in adulthood… and like you, I have an NT partner whose first name begins with K! You are SO lucky to have such supportive family and friends around you. Kudos to them!
One thing I wanted to say – whenever I'm tempted to think about what might've been, I think of a saying which goes like this.. "We did the best we could with the knowledge we had at the time. And when we knew better, we did better." We simply didn't know about autism or Asperger's Syndrome when we were kids. But now that we know, we can help ourselves and others. I, too, hope that our efforts will turn into real resources. Cheers and best wishes to you!
I was just diagnosed with Asperger's yesterday at age 35 so found your article extremely helpful. One thing I do have a question about, especially for those diagnosed as adults, is how did you tell your parents about your diagnosis?
I've asked myself the same questions (i.e. what if I had discovered earlier that I has Asperger's). I wonder how much my life would have been different. I grew up in a dysfunctional family, so I'm not sure I would have had the support I needed — so I sometimes think that finding out later was better in my cases. Still, though, I think it would have at least helped me to know so I can better understand myself.
Thank you for sharing. See you around the interwebs.
Thanks you Lori for sharing that. It was poignant, well-written and interesting. We all seem to have so much in common. Its so nice we have a place we can communicate in ways that are comfortable for us, and maybe at times, a bit uncomfortable but, at least we know we are in a safer place than the rest of the world feels, at least to me. Kudos.
It is amazing how much so many of us have in common.
@womanwithaspergers: I have wondered if finding out later was better too. So much less was known back then, that having a diagnosis of autism might have led to even worse things than not knowing did.
@outandout: yes, I am very lucky to have such great people around! I like your saying. I think our efforts will help. Thanks to the internet, it is so much easier for people to find information, especially first hand accounts from people instead of just medical information.
@Riayn: It was pretty easy for me to tell my folks because it answered so many questions that they have had for so many years. Also hard because it wasn't something that could be cured. At the time, that seemed pretty horrible to me, but luckily we have all come a long way since then! I have heard of several people who's parents did not believe that they were autistic either because they had a previous diagnosis that the parents could understand better or because they didn't think that anything was 'wrong' with their child.
You posted this in April, I'm just reading it July 2nd but I'm grateful for it. I'm the NT partner to a suspected AS. I would love to hear more about K's experience. I would love to hear more ways of working with AS(although, I suspect it's often very individualized) I feel like I leave space for all the diversity in ways of being in the world thanks to a brilliant father who had severe learning disabilities. Thank you for posting your experiences, I suspect they are similar to my partner's experiences. Do you have suggestions for best resources about relationship and communication issues, ours is more difficult due to some complicated grief experiences.
Thank you so much!
Thanks for your comment anyw0man. Karen is the "Ask a NT" forum moderator at the Autism Women's Network site. She writes some great stuff over there and also answers people's questions.
As far as resources about relationship and communications issues, I would also recommend the related forums at the AWN site. I believe they are all in the Strategies For Daily Living section of the forums. The 'Ask a NT' and 'Neurotypical family and friends' forums are in that section too.
There are some other great online resources as well. You can find a partial list of them on the Resources page.