This conversation was held on an Close Group on Facebook.
NF Firstly, Thank you for allowing me onto the group.
Secondly, I am a mother of a recently diagnosed autistic boy – so I will have questions. Lots and lots of questions.
My Question and it might be a silly one: Apart from rocking, flapping hands or arms, spinning and the other was of stimming, what other was do you cope with emotional distress? Because my son does not do the rocking, flapping or spinning.
TM You are welcome.
Stimming is not just for stress relief. It is also an expression of pleasure, or just a way of being, like some people whistle as they do carpentry or some other task, not because they are particularly elated, but simply because that is what humans sometimes do.
In addition to movement stims, many of which I do publicly, I have vocal stims which other people rarely hear, because I try to limit them to home. But I find myself occasionally doing them when I am with my mother. Mine tend to be high-pitched, but my non-speaking godchild makes growling type sounds.
NF He is turning 4 in August, so still developing his personality, but he is strong willed. Currently not very vocal in a sense that he has a few words, but no sentances. He will show you what he wants. He likes being outdoors, but not amongst a lot of people. Currently his thing is trains, but he still loves his cars and planes. And he loves Lego. He does very well at memory games and like things to be in a straight line. He is just starting to dance to music and singing. He has been going through some eating issues. When he is upset he would rather go to his room and close the door.
C if he needs alone time when emotionally stressed then give it to him. wait for him to be ready. in public its a bit of a minefield. when my boy had emotional meltdowns i used to use my hand as a spider which he would talk to. he was able to tell spider what was wrong even though he couldn’t tell me. if your boy is starting to sing he probably know far more words than he uses. maybe see if he will talk to Thomas the tank engine?
NF Thank you for the suggestion, he has a Thomas lego engine I can maybe use. Once he starts talking more it might go easier with the public meltdowns, but at home, when he needs space, he gets the space. Alex also has a high pitch shriek which makes anyone with a hearing aid turn down the volume :).
TM Ohhhhh, if you had asked me how I prevent myself from having overload or a meltdown in a stressful public space, my answer would have been very different.
NF Ok, how do you prevent from overloading in public? We are only now starting to work on it with his tutor. At the moment I just grin and try to get out of the public space as soon as possible, which is not very helpful to Alex.
TM Number one, I treat the actual physcial causes of the problem, not just the hypomagnesaemia and hypokalaemia, but also the cofactors, such as the inflammation, amino acid issues and so on. This is because I prefer preventing or at least minimising the problem to having to ‘cope’ all the time; plus, leaving the physical problems untreated can lead to a cascade of other issues.
But when it comes to coping, then DEFINITELY custom-made earplugs would be part of the arsenal (I carry them with me wherever I go, even out in nature), plus twisting for joint stimulation (which I guess could count as a sort of stim), and actually avoiding the triggers or minimising exposure; dark glasses help too. For a small child, intra-aural noise prevention is often irritating, so headphones are often used.
Thanks to treatment, I rarely need my custom-made earplugs nowadays, but occasionally use them just in case, such as on Saturday when I went to Brownies & Downies, a coffee shop that is more noisy than most.
C going shopping at quietest times is helpfull. if left to come out of it naturally. how long does it last? or does it carry on untill you remove him from public
C the NAS in the uk put this together which might help
NF it last until we start driving because then he will have cried himself to sleep. Hence we don’t go to the shops much, just to a park near to the house. But we are working on it. It depends really on his mood, when he is having an off day, we stay out of the public spaces, but when he is in a good mood, we get about 2 hours before things go south.
C only thing i can suggest is to follow those tips and remember. Dont feel intimidated by other peoples ‘judgey faces’, If they are put out by your sons autism its their problem.
JM I cope with emotional stress in public by shutting it down. But I’m an adult–I had to learn to do that. (Don’t worry guys, I let it out later, in private, at home). I think the beginning of learning how was an awareness that it was temporary. The time in public, I mean. Perhaps you could give him a stopwatch or something similar, easy to use. A count-down timer, really. And then do practice runs. Like “we’re going to go to the grocery store. We aren’t going to buy anything. When we leave the car, you press that countdown button. When it gets to five, (i.e., five minutes) you let me know and we will leave the store and go back to the car.” You of course pick the amount of time, but he controls the leaving, you see. When you’re a kid you’re not in control of anything and that makes stress in public situations worse. You can’t just leave. This way you’re letting him make the decision when to leave. (You can discuss the amount of time beforehand with him, even; let him set a time if he’ll do it.) Go at a time when not many people are there, like to a 24 hour grocery store at 7 am or 10 pm. And when you get back to the car, ask him how he feels. Even if he’s not verbal much, he can tell you (perhaps you could have toys in the car that range in size from small to big and he can show you that he feels “big” upset inside himself, or “little” upset). If you see where I’m going with this, you slowly work up the time until you’re spending enough time in the store that you could actually pick something off the shelf and pay for it.
It’s just an idea; I don’t know where you are in your journey with him and as a woman, I’m not really familiar with how boys’ autism manifests, not internally. But I know having control over the situation helps me, and being able to leave when I want to. (You should let him know that if he wants to leave before the agreed upon time is up, he can–but only if he can’t “hold on” until he gets to the car. If he does break down (crying, etc) but only in the car afterwards, consider that a victory. Learning to delay your reactions is a really helpful thing as an adult!
C its a cleaver idea
NF It sounds like something I will give a try. I already have the timer for his potty training not that it is the same thing, but he has gotten use to the concept that there is a set time for doing something.
JM Cool-but use a different style of timer if you can find one. It’s a lot to expect of an autistic mind to generalize stuff. Better if you have one type of timer for one thing and another type for another (even if it’s just a different color or a different shape).
NF Thank you guys, for the input, as for the earplugs – he is not sound sensitive and likes the noise (unlike me who wish I can wear earplugs all the time), so I don’t think it is the noise that is causing him to react. Either has he shown any sensitivity to light yet, (his dad is light sensitive). He has not have any issue with smells yet (unlike me who can pick up scents very quickly), so it is not having a problem with the smells of the malls. His current doctor said he seeks sensory input. Maybe he is like me and just don’t like crowded spaces.
JM It may be a “straw that broke the camel’s back” situation. You know, when a million tiny things go wrong and then a friend asks you if you’re okay, and you haven’t a clue what to say because there’s nothing “big” wrong, just lots of tiny things? Maybe it’s just a little bit of sensory issues, just a little bit of transition issues (we don’t like changes, and when young, even a change from “the car to the store” is a change we don’t like), just a little bit of this and that, so when you ask him why he’s upset, he can’t tell you because he can’t really identify any one thing as being the cause. Just an idea.
TM Ah, it may actually be a fluctuating sensory profile. NVZ has some of the same characteristics — she seeks sensory input for some things (and at certain times), but avoids it at other times. When CB and I were tested some years ago, we both had a fluctuating profile, but I tended towards avoidance, while she tended towards seeking. It makes sense when one understands that these things are determined by electrolytes, and if that is unstable, one’s sensory needs will also not be constant. I have occasionally experienced hyposensitivity, and it felt just as yecchy as hypersensitivity to me, and in both cases, my reaction was to hit myself to feel better.
NF His blood test showed his electrolytes to be fine. The only things out of place was one low iron store (was prescibed p5p), high b12 and folate and low vitD(was prescribed VitD supplement). He also had some inflammation on his white blood cells, but that the dr said is not a concern.
TM High B12, interesting. Then no need to supplement there.
TM Low Vitamin D can lead to feeling miserable, and also to ADHD type symptoms.
AL I was going to say space.. It’s just as important. I am my sons trusted friend and the only one allowed to comfort in Times of stress. I have 3 autistic children. 6,5 and 3 years old. Go with the special interests, embrace and encourage them. Get excited about them and teach each other New things. Develop a close bond and encourage a friendship of love and understanding. Don’t ever stop him from expressing himself and make others respect and be aware of his space and need for privacy. Sensory websites that sell sensory aids are awesome. Have a shop around and above all.. Any therapy you seek must be play based. Avoid ABA like the plague. Pm me if you like x
AL Ear defenders will help and learning to notice the que’s of when it’s getting too much.
CL Could he have high b12 on a test but it isn’t being used properly? I thought things like b12 and folate can show up really high in blood tests when they aren’t actually being methylated?
TM Wow, I hadn’t thought of something like that, but it makes sense. Like, people who have a CBS mutation can’t cope with sulphate rich foods, yet their bodies may actually be deficient in sulphates.
CL I always thought that’s why folks who are mthfr take b12 supplements that are already methylated.
TM Some of those people are undermethylating and some are overnethylating. At least, that is what some of the MTHFR experts say. Most autistics who have an MFTHR gene mutation are undermethylators, although overnethylators do exist amongst us too. Dr Lindenberg actually talked about it at a workshop where we were both speakers.
CL Hmm. Either way I would be skeptical of a blood test.
CL Also re: vitamin d supplements. I think good quality cod liver oil is usually the alternative to D supplements. Lots of other good stuff in there too.
SCIENCEALERT.COM|BY TIM SPECTOR, THE CONVERSATION
TM Unless you have histamine issues, then the fish oil things are not that great, AFAIK.
CL Why not? I love taking it in winter when we can’t go outside here
CB Look at the high quality butter and codliver oil product suggested by Weston Price foundation