Published on 12, July, 2020
My son is 12 and after raising concerns abut his social communications I finally received the diagnosis for him of ASD. There are so many emotions and I just feel a little lost to be honest.
The paperwork is a multi-agency report from ASDAT using DSM-5, the levels of impairment are stated as Level 1 for both social communication and restricted interests but I'm struggling to find what this means in real terms in order to help him understand the diagnosis.
Getting the diagnosis was a long process, I was 'fobbed off' for years and his quirks and foibles where attributed to a range of alternative factors. He is in mainstream secondary school and on the middle/ top flightpath of attainment for his age. The lady in pastoral is his best friend, she looks out for him and helps him to regulate and get through the day. At home all the coping of the day tends to overwhelm him and he lashes out generally verbally but on occasion violently, this is part of him and we as a family try and provide him with the space and time to decompress when he gets home.
Several years ago he was referred to CAMHS due to self harm and suicidal thoughts, they concluded that until an ASD assessment was done they were not able to work with him. This has finally taken place and the above paperwork was issued. He still has very dark thoughts and has a tendency towards negativity but the incidents of self harm are thankfully few and far between.
During his transition to secondary he became obsessed with the idea that he was abnormal, broken and damaged and was given a family support worker to try and help him through the transition period. It was agreed that we would explain to him that he was possibly on the spectrum and that this could explain some of the struggles he was having. This helped him as he felt that maybe he wasn't broken or damaged but that his brain worked differently.
When he finally received the diagnosis verbally in November 2018 he struggled with not feeling any different to how he had the day before. He reads extensively and has read books and articles on ASD and knows adults and children on the Spectrum and understands that ASD covers a wide spread of abilities and quirks. There are so many 'labels' and 'classifications' in the literature now but I'm struggling to find any guidance on what the diagnosis of ASD with the level 1 impairments means in more child/ teen appropriate language, I hate the term impairments to be honest, and I have a teen with a compulsive need to understand himself who is unsatisfied with a simple 'ASD' diagnosis, any advice or pointers towards guidance would be gratefully received
I can certainly identify with not feeling any different than the day before he got his diagnosis. That’s exactly what puzzled me for a while.
It’s so difficult to know what to say to you that might help, as we all come to the diagnosis, with our previous life experiences, which have all helped to shape our understanding of ourselves and the world around us, in one way or another.
You’re right to not look at your son, with any labels of impairments or otherwise, pinned on him, because this is a time of self discovery for him. He needs the freedom, in whatever way works for him, to find his answers. And it sounds like you have always given him just that, and that’s why he’s on this journey at such a young age.
I’m just wondering if he reads any spiritual kind of literature? There’s a book on autism and the god connection, which helped me on my journey of self discovery and understanding. As well as an extensive amount of inner work, which could be called spiritual work, but with the reputation that word has, it kind of cheapens the experience.
I think it’s really all about how we each, individually, perceive and experience the world. Most people perceive and experience the world in a similar way, and therefore, through the nature of their similarities, they have a shared understanding between them, that others, who don’t perceive the world like them, are not such a big part of.
Some people in the world, are born with a different way of viewing the world. These are the people who don’t think outside the box, they’re the people who don’t have a box. They’re the inventors, the pioneers, the revolutionaries and the game changers.
However, all is fair in love and war and we all have opportunities but the deciding factor, is, do we take those opportunities?
Autustic people are well positioned to really follow their passions in life and maybe make a difference in the world. The key is, to taking the time to get to know ourselves, to the best of our ability at any given time. To learn to accept ourselves and love ourselves. To extend that out to others, and to simply, live our most joyful life.
Every journey has a beginning and the only place we can start, is where we are now. I would suggest things like learning to relax. Helping his mind to process all the information he’s been feeding it. Maybe take up a hobby such as archery, or something similar. Develop a peaceful and calming bed time routine. I’m currently developing this for myself. It’s trial and error. And it’s a slow slow and gentle process. Explore meditation or other types of relaxation therapies. Yoga. Fresh air. Explore all and any ideas.
We can be extremely intense in our thinking, but I’ve finally learned, that the more intense I am, the more stagnant I become. And the more relaxed I am, the clearer things get.
All I can do is speak from my experience and certainly, bringing more calm and gentleness, kindness and compassion, patience and understanding, into my life, is helping me. But it’s a process. I’m very intense by nature, or rather, my thoughts are, so for me, it was finding things to somehow break the intensity of the thought patterns and to slowly but surely, prize open and widened my view..
I’m not saying it’s easy, but the rewards are well worth it and what are the alternatives? Maybe let him know that all of the great inventors throughout history, have had clear autistic tendencies. Help him discover what he loves, that which makes him feel alive, and try to balance it out with learning skills that will help him find his place in life and feel part of the human race, no matter how different he may appear to those around him.
I would say contact with other autistic people would be great as well. That’s been a tremendous help to me. Through learning to love, like and accept my new friends, I had to learn to love, like and accept myself and simply allow who I am to evolve.
We never actually ever ‘know’ who we are, because we’re always changing, growing, evolving so persistently searching so intensely for who we are, isn’t going to help. The best we can do is know who we are now, without labels, but with understanding, and know that this a transformative period of time, in anybody’s life, whether they’re girl or boy, nd or nt or otherwise.
I don’t know. I guess I just wanted to say something. I would say keep on doing what you’re doing, supporting your son in whatever way you can to help him get through these difficult times. But I guess if you wanted to give him a bright light to look forward to, you could let him know, that far from autism making you just, a bit different, it puts you in the top category of people in the world, who have made a difference in in the world in one way or another, because of their intensity, love and passion in their special interest.
He is already demonstrating a fine and sharp intellect, that can certainly be nourished, guided and supported. I don’t know. I just keep thinking maybe helping him to learn to relax, self sooth, to develop a network of friends who he can relate to, a good balance of physical exercise, fresh air, a good wholesome whole food diet or as good as you can get it, precious alone time, fun times, family times, etc. We’re a mix of all of those things. And I guess, ultimately, reassuring him that he’s valued, loved and appreciated for exactly who he is now, and as a young man, things won’t always make sense, but if he shares what’s on his mind, with you or somebody, you might not always have the answers, but a problem shared really is a problem halved, and there’s nothing that his favourite treat won’t make feel better he’s lucky in the respect that he has his diagnosis so young and that he has you who is so understanding, supportive and actively doing all you can to support him, but I’m not sure if anything can take away some of the growing pains we all go through. I guess just letting him know that you’re there for him.
I’m really not sure what to say as I’m not a teenage boy or a parent of one. It’s hard, but the fact that you’re asking, tells me you’ll get your answers. Best wishes.
hi today yesterday we finally got the diagnosis of our 12 year old for asd he is already confirmed adhd but to hear the results today feels like a weight has been lifted but with a long road a head as he is getting failed through school .
Hi, My daughter is 14 and in main stream secondary school. She seems to mirror your son and I am convinced has un-diagnosed Aspergers. She has been referred to CAMHS twice but not met the criteria. I can't get her to the dentist, vaccinations are due, subject choices are looming, she refused to attend careers evening and I'm not sure if I should pursue a diagnosis or not. I have not discussed Aspergers with her and have described her problems as anxiety which she seems happy with. I am not sure if I would be opening a can of worms or if it would offer her the final piece of a jigsaw.
Hi there, glad you finally got a diagnosis. I’m surprised they used the DSM, that is usually only used in America, most clinicians in the UK use the ICD. Anyhow, I found this link which may help explain
https://www.autismspeaks.org/dsm-5-criteria
Speaking from experience, going through adolescence (and adulthood) on the spectrum, without a diagnosis or the knowledge that I was even on the spectrum was a minefield of wondering why I was different, why I couldn’t maintain friendships, reading problem pages in teenage magazines to try to cobble together some semblance of a socially acceptable facade, just wondering what was wrong with me. Hopefully now that your son has a diagnosis, in time he will learn to accept himself. I hope he will also receive early intervention support. Good luck