Thank you for saying that, I thought I was going to have to. I heartily endorse your reading recommendations too.
I was 40 before one of the many learned labellers I’d taken myself to informed me I ‘had’ Aspergers. I’d not heard of it before, but it turned out to be a unified theory of me. I prefer to say I am Aspergian, since I don’t ‘have’ maleness, heterosexuality, right-handedness etc, I just ‘am’. The problems that arise from it are not dissimilar to the problems encountered by a wheelchair-user (who is disabled by stairs and enabled by ramps). It’s considerably harder to adapt society to accommodate autism, alas.
Alice, I hope it helps to have the label - it certainly helped my relationship with my mother. My adolescence was not unlike your son’s. Though I still intermittently sought something from the medical community (support, explanation, understanding? I just knew something wasn’t ‘right’ and things sometimes went very wrong), my adult life has largely been productive, joyous and creative. There may yet be a 'savant’ish element to your son’s make-up - I didn’t find mine for a long time, but it’s been good to me
Thanks for sharing your experience, Jack of Words (sorry, don’t know how to bold on my cell)- it’s comforting to know there’s hope.
Pyper, therapeutic foster care, in my experience, which has been with just one family, isn’t that therapeutic in terms of helping him one-on-one. It’s therapeutic in that it keeps me safe from him and him safe from lashing out at me, and we are able to have more support from professionals, but the foster family isn’t really trained to help him deal with his temper problems or anything. There’s much more leniency in terms of visits, calls, me knowing where the home is, etc., than if he was taken from me and put in foster care. I retain custody and guardianship, and so could literally go pick him up at any moment and end the arrangement. Let me know by pm if you would like more info about it.
My four year old son was just evaluated as having ASD a month ago. It was, as others said, a relief in a way to finally have someone make the call after a couple years of feeling like something was “off” but always getting a wait-and-see response from his doctors each time we raised concerns. He speaks but mainly repeats what’s being said or else has some canned phrases to get what he wants (“More juice please, daddy!”). Very touchy about changes to routine, doesn’t engage in imaginative play, lacks some fine motor skills, has some repetitive behaviors. But he’s also very smart, can read by himself, is very social and loves people talking to him, getting hugs and stuff like that.
We finally pressed his pediatrician to recommend us for a screening with the school district and they said he ‘probably’ fell on the spectrum. Actually, they said he almost certainly does but they can’t legally diagnose. He is eligible for special schooling though and thankfully his birthday is such that he has almost two years before kindergarten. He scored in the upper 99% on his cognitive skills and between that and his willingness to socialize we’re cautiously optimistic about his future once he gets some extra help in unlocking some of the other things. In the meantime it helps just to know and try to understand what he’s upset and frustrated about. Even prompting him to say “I feel sad” or “I feel mad” can cut an outburst down considerably.
As a bit of irony, his current pediatrician who several times said my son was “about the same” as his daughter’s development so not to worry told my wife last visit that his daughter was now having her second evaluation.
Very interesting! Many times, kids on the autism spectrum have a parent or two with the odd Aspie trait here and there, but not a full-blown obvious case, as Mama Zappa pointed out. This can be an easy way to help gauge whether you feel the diagnosis is accurate or a stab in the dark. Any traits in yourself or your son’s dad that jump out at you?
His dad has a lot of problems, namely bipolar sociopathy- autism hasn’t been thrown out there. I actually score pretty high on the screening, but I am highly sensitive, and I believe there are a lot of similarities between being very sensitive and being autistic- I’m introverted, have almost no filter for sounds and other external stimuli, become overstimulated quickly, etc., but I do not believe that I’m on the spectrum. His father’s daughter has a young son with the same form of autism that he has, so it definitely could be genetic. In fact, he is currently being tested for something known as PTEN gene mutation, which can cause autism, if I understand it correctly.
Super-sensitivity and overstimulation are certainly common traits of Aspie-spectrum people, as I think you’re saying. It’s much the same in my family, with many of my sibs having random traits, and their children having much more pronounced syndromes. Which they’ve managed to outgrow most of, yet retained the beneficial aspects of, such as would be useful in scientific fields. Please keep us posted on how this plays out!
Glad you got the diagnosis. It can really help both you and your kid figure out ways of dealing with the world and the way the kid can work within it, and when it comes to things like school and foster care it absolutely helps to have a label of some sort to guide their interactions with your child. There’s no one teaching technique that helps all autistic kids, but there are some that will help most, and just having the label makes teachers, etc, pay more attention to the fact that the way they act towards a neurotypical kid might not work. They’re more likely to ask “what do I need to do to help him pay attention?” rather than assuming he’s not paying attention because he doesn’t want to.
Although that still happens too - the kid not paying attention because they don’t want to. An autistic kid is still a kid and will still be occasionally boundary-pushing and messy and annoying. It can be tempting to put everything down to their condition but not everything is.
The older kid with a new diagnosis needs reminding of this sometimes too because he might well go through a phase of using his diagnosis as an excuse for being a total arse.
TBH I think kids are more likely to be diagnosed with asthma despite not having asthma, just bronchial inflammation, than to go without that diagnosis. It is not an under-diagnosed disease.
Hmm, interesting. I have rheumetoid arthritis and my daughter is autistic. However, I was diagnosed over a decade after she was born. Do you have links to any of the stuff you’ve been reading? I’d be interested to see them.
You can’t learn not to be autistic, but you can learn to manage yourself better, which I hope is what you meant.
Martial arts really are theoretically, a really good way of doing that, but IME it takes a really sympathetic martial arts instructor to deal with an autistic kid. My daughter can really only take one instruction at a time and needs things broken down into minutiae; with that, she can do well, without that, she flounders. She had karate classes with a teacher I knew well, and it was great, but when we moved locations it all broke down. Classes tend to be with neurotypical kids in echoey halls with lots of instructions and people watching.
Same with swimming lessons; we had a great teacher before we moved (she’d taught J from the age of four months, so knew her and her ways), but it took us a while after we moved to find the right teacher and then we travelled out of our way to go to him.
Swimming is as good as martial arts or anything that requires discipline and graduated learning but not teamwork as well, which TBH is a bit too much of a challenge for something meant to be fun, for an autistic kid.
My son was diagnosed with autism around age 6. He’s 17 now.
Whenever people ask me “what’s different about your son” I always say “nothing” because he is completely normal to me. I live in the forest, so I don’t really notice the trees.
Last fall, a stranger’s comment and some other snowballing issues prompted me to have him reevaluated. I made the appointment in February and we were seen in October.
We just completed his big evaluation and I was totally shocked that it came back with a new diagnosis of ADD (and a couple of smaller things). All the academic problems I thought were autism related are most likely ADD related.
I’m kinda kicking myself in the butt for missing this- in hindsight it’s so obvious… and I always liked that the autism diagnosis didn’t involve any of those meds. But now were are looking at the med issue and adjusting to the new diagnosis.
Yes, it seems to play a role in around 25% of cases of Autism
Basically you have several types of Antibodies or Immunoglobulins in your body and IgG is the one that passes from the mother through the placenta and should help protect the baby but in some women with these Autoimmune disorders it appears to actually “attack” the developing fetal brain and change the path of normal brain development.
Autism occurs more frequently in males than females, and I have read that females with Autism are likely to have more severe forms of it, Is your daughter’s case more severe?
No, her case isn’t more severe at all. I mean, people can always tell something’s “off” with her but she can speak and all that, got good GCSE grades, etc. Might have a fairly normal life someday.
Interesting link though (you need to remove a http://). I do also have quite severe asthma, which is another autoimmune disease.
This goes counter to what I’ve read about females and autism. It’s not that it’s more severe in girls/women. It’s that the symptoms that show up in girls are often different than the ones in males, so that they are missed easily UNLESS they are severe. A girl who has high-functioning autism may be pegged as shy or “highly sensitive”. Girls are better mimicks than boys, so they are able to mask social and emotional awkwardness. They may graduate to adulthood with friends and SO’s, but still deal with some of the problems that come with being “neuroatypical”.
I am intrigued by the link between autoimmune disorders and autism. My mother has rheumatoid arthritis, my father fibromyalgia. I have an elevated titer of strep antibodies, even though I’ve never had strep throat.
It was while was I trying to control my Tourette’s when I was given the Asperger’s label. The neuropsychiatrist and psychologist who’d been working with me pointed out that the tics (including mild catatonia), the clumsiness, the obsessiveness, the social and emotional pecularities, my restricted interests, and even the nature of my speech fit a pattern. I went through a few months of denial. Then I accepted it. Then I rejected it. Now I’m like “whatever”. The scientist in me can appreciate that I do indeed meet the requisite criteria. But it is not an identity that I care to adopt for myself. I don’t know anyone who is an Aspie, but I don’t think I’d feel anymore kin them than I would anyone else. I’m just a person who is within 2.5 standard deviations of the mean, rather than 2.
I don’t think anyone would see me as anything other than quirky. I come across as super serious and intense, but I’m only really like that when I’m at work and I’ve got shit to do. I do not fit the stereotypes (at least, I don’t think I do). So that’s why I’m like “whatever”, I guess. I understand why other people seek out the diagnosis and make a big deal about it. But for me, it’s just a complicated label that doesn’t describe me very well. It’s just a medical description to aide with pharmacology.
Yeah…several of the autism experts I know are no fans of Autism Speaks either.
The real person, Kim Peek, didn’t have autism. He had FG syndrome.
Alice The Goon, has he also been evaluated by a psychiatrist? About a third of the people with intellectual disabilities and/or autism also have a mental illness (which is why the organization I work for exists), and it often manifests with behavioral issues such as you describe. Many respond well to treatment, though.
Yes, he used to see a psychiatrist at a behavioral health place- just a quick telemedicine thing. He quit going there because they always neglected to call us when we had an appointment and the doctor wasn’t going to be available, and just started getting his ADHD and depression meds from his PCP. But we are making arrangements right now to get into another place to see a psychiatrist, as the developmental pediatrician he sees has suggested that Risperdal or another anti-psychotic may help him with his anger/impulse problems. Which he really seems to need, as twice in the past two months he has gotten physically aggressive with me (just went to court today, again) and will not be coming home in January as planned.
Wow, I’m sorry to hear that that is an option on the table. Risperidone is scary. But then again, so is living with a person with an uncontrollable violent temper. I hope you find a solution that gets your son back with you in a way that is happy, healthy, and safe for both of you (even if that means an anti-psychotic drug).
