A Mild Form of Autism?




This tweet was prompted by an incident at an autism-awareness event last month. Towards the end of proceedings, I spoke to the assembled company about Asperger’s syndrome being a hidden disability, and how my already considerable difficulties were worsened by society’s expectations of normality. I said I wanted people to understand that, just because I look normal and can (for short, exhausting, periods) put on a performance of normal, there is nothing mild about having Asperger’s. There were calls of agreement from the audience, an autism-friendly round of applause, and I went back to my children – their little faces glowing with pride that their mummy had stood up and spoken.

Next up was a woman who had a son with severe autism. Bristling, she spoke about how severe her son was, yes, very severe, and how you might see the two of them around town, and how you couldn’t miss him because he was so severe… Something inside me died. Even to me, it was clear I had offended her, about which I was mortified, but she had misunderstood me; she thought I was saying all forms of autism are the same, and that I thought I suffered as much as her son. I confess, I nearly burst into tears on the spot.

I hate conflict, and in particular, any division within the autism community; but there is a division, isn’t there? Right there: the devision between people with severe autism and people like me. I can see why their carers think I’m so very lucky: I can talk, I can drive a car, I am married and have children (and a realistic hope of grandchildren). I even have a job. What more could I possibly want?

For the next three hours I considered giving up autism advocacy. I questioned how someone with my lack of subtlety can possibly get across something as important as autism awareness to the general community? Hell, I couldn’t even get it across to the autism community. But a pep-talk from an aspie friend put me back on my feet; I took out my phone, wrote that tweet, and Twitter completed the rescue.

So, sure, Asperger’s syndrome can be considered mild when compared with severe autism. It can be considered mild in the same way as losing a leg can be considered mild compared with paraplegia. But do we refer to amputation as a minor injury? Do we go around telling amputees, “count yourself lucky you’re not paralysed”? No. We do not.

That severe autism exists, does not make my life any easier. And nor do my struggles detract in any way from the enormous difficulties facing severely autistic people and their carers. I’m a huge fan of positive thinking – I can talk, I can drive a car – and being positive helps me in so many ways. But it does not cure me. However lucky I might be in comparison with other people, I still struggle with my own, very real, issues.

So, please, don’t take what I say, then add a “yes but…” and list all the things that could be worse. Please just hear me: I’m not saying there is no severe form of autism, just that there is nothing mild about having Asperger’s.

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30 Responses to A Mild Form of Autism?

  1. Reeshar says:

    My daughter dropped a bit of a bomb on me recently. As I approach 62 she suddenly said she had thought for some time I was autistic. Very very mild in that I’ve never felt impeded in life by how I am, but it did suddenly explain some of my patterns of behaviour: my social awkwardness, my tendency to say things that don’t fit in with the conversation, the struggle worrying whether something I’ve said or written was perhaps socially inappropriate, my tendency to ask too many questions at lectures to the point of causing some discomfort to speakers. I also have an strong intensity of focus when working on something. Even when driving a car it’s not always easy to hold a conversation.

    My early adult life was marked by isolation and I resigned myself to living a life on my own. I did have friends, in fact very good friends with whom I tended to form deep and intense relationships, but forming casual acquaintances was difficult. My attempts at conversation with women were largely rebuffed. I’m struck by panic where I go into s social situations where I don’t know anyone and suffer a desire to flee – and have done that several times in the past. But I’ve also been very lucky in being highly intelligent (sorry, I don’t mean that as a boast) and very adept at analysing situations which don’t involve me personally. So I’ve had a good career, and did eventually find a wife and have kids.

    So here are my questions: at what point does one start to appear on the autistic spectrum? If I appear at all, I suspect it’s at the very tip of one end. And so that I can match up some of the things I faced as a child, what are the difficulties you talk about that you faced as a mildly autistic person? What helped you manage those difficulties? Since autism would never have been diagnosed when I was a child, I had to cope by myself with being what most would consider an oddball.

  2. Sandy says:

    I’m new to Asperger’s – not that I didn’t know anything about it, but I didn’t want to realize it applied to me until, literally, the day before yesterday. Dear friends had recommended that I look into it several times, but it was only after an instance of catching myself, again, doing something that nobody else thought was reasonable, that I decided to look up symptoms, found and took the AQ quiz online, and realized my friends were right, that I really do function in the world in a different way, a way that has a name and a community. The (self-) diagnosis (and yes, I will talk with my doctor about it) explains so much about how I function, and what I have to do in order to take part in society. It has made it easier, even just this first day, to function in my work, and to see how I might be able to function better by taking my characteristics into account, instead of trying to do things the way other people do them.

    My life, like yours, Leigh, has been hard in a totally different way from the son of the speaker after you. I have enormous sympathy for anyone with a severely autistic child, and for anyone dealing with severe autism. That’s a hard row to hoe. I know that I’m lucky, that I’m so high-functioning that it took until I was 61 to figure it out, and that my life has few limits that I cannot overcome, especially with the information I now have about why things are hard for me.

    But you are right – there’s nothing mild about Asperger’s. If it were mild, it wouldn’t have been such a huge relief — such a positive, life-affirming, relief — to realize that I had it.

  3. Ana Cooper says:

    This helps so much please don’t stop advocating. My son was just diagnosed today with a mild form of Autism or Aspergers .. So looking into all the knowledge and info I can get . And he too is high functioning, you wouldn’t know it from just looking at him its the struggles that he is going through inside daily.

  4. Jax says:

    Thank you; well said! In the above discussion, one might say my son only has a foot amputated because like the writer, he has a wife and a son and friends and has held a job when needed. This does NOT imply that his life and his struggles to attain these very average sounding achievements has been an easy road. He works for, struggles and genuinely suffers just to get through a day with his young son, and more so when exposed to a loud brash population that can’t understand that he doesn’t read their body/facial expression, that his own expression often belies what he is actually saying, and where light and sound and touch are nearly overwhelming affairs. Thanks.

  5. Lynda Flood says:

    I think this is a wonderful post. I can relate to it as my son’s case is very mild. I always feel pangs of guilt when I talk to others about his Autism, as if I don’t have a right to feel frustrated or upset. But I do. His symptoms may not be severe but they are real & cause for my constant concern & worry.
    Thank you

  6. ricky says:

    aspergers: normal to genius IQ. – severelly autistic: mentally retarded. this is a fact that parents of the retarded autistic can’t deal with. in fact i think a lot of them probably aren’t even autistic but mentally retarded and parents in denial.

    • Leigh Forbes says:

      Thanks for your comment, but I’m afraid I must disagree! Although the difference between “high-functioning” (aspie/HFA) and “low-functioning” (severe) autism is often defined by IQ, the accepted threshold is 70, meaning that many aspies will have an IQ well below that of the normal (average) person. In addition, some severely autistic people are able to display incredible mental ability. It’s not constructive to suggest that parents of severely autistic children are in denial about their children just being “retarded”. If they have a diagnosis of autism, then they’re autistic. It hardly makes it any easier.

  7. Ictus75 says:

    Well, that’s it, it’s all about perspective. Yes, Aspergers is not as bad as severe Autism, bit ask any Aspie about their life and they will tell you of their struggles. And these struggles are different, but no less a struggle. Please keep advocating. We need well spoken voices like yours.

  8. Shannon says:

    This is so well said and I needed to hear it today. Thank you

  9. Wonderful post Leigh! I absolutely agree with you that there is nothing mild about having Asperger’s Syndrome! You are right about there being a division between severe autism and high functioning autism. Severe autism can be seen as an obvious disorder. With high functioning autism most people don’t see or recognize the disorder and, therefore, feel that it’s not as debilitating as severe autism. In some ways it’s not as debilitating and yet in other way it is. However, those of us that have HFA of any sort or those who care for someone with HFA can recognize it and realize how hard it is to have to struggle with it on a daily basis. Please DO NOT give up your amazing fight for autism advocacy! You are an inspiration to so many!

    • Leigh Forbes says:

      Thank you!
      I think this something that worries me about the removal of Asperger’s from the diagnosis definition. As we will all, in future, just have autism (which is fine in itself) I fear people are more likely to think we must be mild cases of severe autism, rather than having our own brand altogether!

  10. This is fabulous, Leigh, and something that I desperately need to hear from time to time. Both my daughters have Asperger’s, and I am constantly struggling with both sides of the the autism fence. Those without autism or autism experience usually assume that my girls’ misbehavior is because they are spoiled brats. Most people who have children with severe autism give me the impression that they feel I have nothing challenging to deal with, which makes me feel frustrated. This conflict of feeling like my girls aren’t understood by ANYONE is why I started blogging about them, and why I seek out mature aspies like you.

    • Leigh Forbes says:

      It is really good to know that I’m reaching parents too. So often they don’t want to consider their aspie children might grow up to be aspie adults, and so block out my existence.
      It is hard when you feel stuck in the middle, though. I sympathise! Keep blogging. It’s such a fabulous way of making contact with people in the same boat.

  11. Steve (Coyotetooth) says:

    When one peels an onion . . . When do the tears begin to flow? Competitive sorrow, pity, pain, . . . All lead down a darkened path. If one were to strip away ego from the conversation what is left is clearly humans with different needs, and asking for those needs to be recognised.

    I am one whose needs are misunderstood; I work to meet the needs and wants of those that are misunderstood. I do so without pity, sadness, anger. I do so by understanding.

    I encourage you to keep writing; to keep pressing for understanding. I also encourage you not to fall prey to comparisons. I do so enjoy learning from you.

  12. Wonderful post. I started to read it the other day and then became distracted. Shocker. Today I found myself in a conversation on twitter with people talking about genetics vs. environment. And I felt bad because I posted AspieKids great recent post about their autistic lineage. I felt bad because it then became a conversation about this. Where someone said the difference was needs across the lifespan. I had to say I still have needs. I commented I would be an episode of hoarders if not for my dear sweet husband. Yes I have it good but as you and Aspiekid have so eloquently explained it doesn’t mean I don’t suffer. Earlier I found myself backpedalling and saying I didn’t mean that I meant I needed the same. I knew one of the parents has a non-verbal son my son’s age in diapers. No my son isn’t in diapers, he is in fact naked because clothes bother him. He wears clothes when we go out though and he can “blend in”. He is verbal but then he is assumed to be normal and when words don’t make sense or have a meaning that he didn’t mean he is judged for that. I could go on and on. I don’t know that my son will be able to blend in & work among the NTs but then sometimes I don’t know if I want him to have to the way things are now. The way I am still nitpicked for my behaviors. Yeah, I really could go on & on. I’ll stop here. Thank you so much for this post. Thank you all for your comments.

    • Leigh Forbes says:

      Oh that’s such a good example! Diapers (nappies to us) can’t be managed any other way, but those of us with sensory issues can wear uncomfortable clothes if we the situation demands it… yet are then judged for being odd about the things we can’t change, when we’ve just made a huge effort to fit in! Frustrating!

  13. Rainbow says:

    I think the problems that come with having a “mild” form of autism can be just as severe as having “severe” autism, but they are different. When you have a “mild” or invisible disability like Asperger’s, the general public tends to put unrealistic expectations on you. You don’t have a visible disability like the child with severe autism “that you couldn’t miss,” so people expect you to be whatever their version of “normal” is and don’t understand the challenges you face every day. I know that people expect me to just “get over it” and say “it’s not that bad, so why are you making a big deal out of it?”

    • Leigh Forbes says:

      Thank you for this comment. I agree with you entirely, but it’s a hard thing to say in the face of people having such obvious difficulties. I think it is this issue that started me down the road to raising awareness.

  14. Karen S says:

    Hear hear! I too feel so desperately sorry for anyone coping with severe autism and the multiple challenges it must bring, but as the parent of 5 children, 2 of whom are on the aspie end, I know how difficult their lives can be. Not always, sure, but often enough, especially in the case of my 6 year old, that I wish people could see into their minds.

    I have a friend whose daughter has several diagnoses and who would be described most commonly as severely disabled – it surprised me when she said she was sorry for me because my battle to help my children was so much harder than hers as their problems are mostly all invisible. She considers herself the lucky one.

    Great post!

    • Leigh Forbes says:

      That’s interesting. A few people have made similar remarks as a result of this post. It’s good to know there is understanding out there!

  15. Lynn Higgins says:

    I am the mother of a child with severe autism, and while the struggles that my son faces may differ from those that you face, I do not believe for an instant that his are more difficult than yours. I agree with you that there is no “mild” form of autism. Is anyone mildly pregnant? Great post and don’t you dare stop advocating and raising awareness, we need your voice!

  16. Wow!! This post really reaches me!! There are high functioning and low functioning neurotypicals too, but we never hear about them. Being neurotypical is no more perfect than being autistic. And being non-verbal should not be used exclusively as a way of labeling people severely autistic, because there are plenty of highly intelligent non-verbal autistics who have incredible abilities and could be considered normal if the overall society would accept autism in general. And I have the same feeling you have, that high and low functioning labels divides the autism community. So it creates a catch-22 situation for those of us who try to be autism advocates. Either we have to admit that we are all disabled, or else we have to listen to people tell us that we don’t really know what it is like to be autistic because we are high functioning. As if we are faking it or something. Becoming high functioning was hell, and I’m more aware than anybody that I am just as autistic as I ever was. My high functioning persona was learned through trial and error and lots of struggles and stress. And when people tell me I don’t understand autism because I am high functioning it is like denying all the suffering and abuse and confusion that I went through during the most impressionable periods of my life, just so I could appear to be normal and fit in. But I will keep writing about the good sides of being autistic, because I still believe it is a great way to be. Is autistic a perfect way to be? No, it is no more (or less) perfect than being neurotypical. Being autistic has its pros and cons like anything else and in spite of people’s perception of it as a tragic birth defect, there really are (in my opinion) a lot of wonderful things about being on the spectrum. Considering the alternative, I wouldn’t give up autism for anything.

    • A Quiet Week says:

      Aspie Kid,

      Beautiful response. I wish I could add more. Instead, let me amplify: Yes, yes and yes.

      Thank you Leah, for a fine and observant post.

      Lori

    • Leigh Forbes says:

      I second that!

    • Sandy says:

      “There are high functioning and low functioning neurotypicals too, but we never hear about them. Being neurotypical is no more perfect than being autistic.” Thank you, Aspie Kid.

  17. Lenore (@lenore13k) says:

    Great post. I deal with the same issues with my son. For what it is worth, I think your advocacy is important and I hope that you do not stop. While there may be a great divide between your story and the story of others, yours is just as valid and it deserves to be told. People like my son need to know you are out there, that you are well and live a good life, and also that you struggle like him, that it is hard for you like it is for him, and that you as still OK, and that you understand. Thank you for what you do (:

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