What not to do during a meltdown - From an autistic adult

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Tambourine-Man
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13 Nov 2011, 7:10 pm

gramirez wrote:
Tambourine-Man wrote:
I too was pumped full of awful meds

If you don't mind me asking, what meds were you on and why were they so awful?


All of them. Antipsychotics were the worst! Geodon, Zyprexa, Invega, Risperdal, and Thorazine all put me in the emergency room and induced suicide attempts.

I LOVE my Dexedrine and Celexa though.


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Tambourine-Man
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13 Nov 2011, 7:13 pm

I wrote a bit about this for the homepage. Hopefully it will be up soon. Until then, I've put together some of my personal triggers, warning signs, and suggestions...

---

My Personal Meltdown Triggers:

Note: It is unlikely that any one of these things will lead to a meltdown. However, combine too many of them and a meltdown becomes imminent.

- LOUD NOISES

This is particularly true of  shrill, high pitched, or droning noises. Dogs barking and vacuum cleaners are at the top of the list. If I overreact to these sounds, please not that I am not exaggerating my distress - I have probably been hiding it for quite some time.

- ABRUPT CHANGES IN PLANS OR ROUTINE

Something as seemingly minor as an unexpected stop while running errands or a sudden change in the the family's collective emotional state can be extremely upsetting to me. I will likely feel guilty for being upset, and try to hide my feeling. This is when the meltdown begins.

- OVERLY STIMULATING CONVERSATION

This is a big one. Discussing religion, philosophy, et cetera, while very exciting, can send me over the edge.

- PAINFUL MEMORIES

- FEELING SHAMED OR INVALIDATED

If you become angry or sarcastic it will set the stage for a meltdown.

- SLAMMING DOORS

- HARSH CRITICISM

---

Meltdown Warning Signs:

- PACING

- PRESSURED SPEECH

- PERSISTENT ARGUING

- HAND FLAPPING

- REFUSAL OR RELUCTANCE TO ENGAGE IN CONVERSATION

- UNUSUALLY EXCESSIVE SMOKING AND SELF-MEDICATION

What to do if you suspect I going to have a meltdown:

Ask me if I am about to have a meltdown. I may not realize it, but I will not usually be offended by this question. I don't want it to happen any more than you do.

Be very calm and unemotional. Get me to a safe and secure area. Distract me with a special interest that is not overly stimulating. If we are out in public, be sure and get me home quickly.

If I do not calm down, administer .5mg of Lorazepam. If I am already having a meltdown I will need 2mg. If the meltdown is intense, I will need 2mg of Lorazepam and 50mg of Seroquel.


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Teredia
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15 Nov 2011, 10:40 am

I really wish people understood this when i was a child. I mean even today, even my parents dont seam to understand "Please go away and leave me alone" or "Go away, I just want to be left a lone."
I say this to people so i dont end up hurting them and their not making my already over stimulated brain worse.
But they never do, they crowd around me and wonder why i lash out.

Now days i will shut down more than meltdown but if im crowded or put in cornered situation while im trying to quietly shut down it will turn into a melt down and usually become quiet ugly.
I suppose people are only trying to help, but its help thats not needed.



jmom05
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15 Nov 2011, 6:04 pm

Like I said, I'm trying to understand my son as best as I can. I sort of understand when he is about to have a melt down, or when he needs to "cool down". I don't think his school understands this though. He is getting in trouble for making noises or crawling on the floor. I think he is feeling overwhelmed when he does this and needs a quiet place to settle. The school says they don't have this resource for him. I mean, even if they sent him to the nurse, or let him sit in the school office I think it would be better than nothing. It's just frustrating for me as a parent to know what he needs and then he isn't getting that at school.



jmom05
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15 Nov 2011, 6:19 pm

Like I said, I'm trying to understand my son as best as I can. I sort of understand when he is about to have a melt down, or when he needs to "cool down". I don't think his school understands this though. He is getting in trouble for making noises or crawling on the floor. I think he is feeling overwhelmed when he does this and needs a quiet place to settle. The school says they don't have this resource for him. I mean, even if they sent him to the nurse, or let him sit in the school office I think it would be better than nothing. It's just frustrating for me as a parent to know what he needs and then he isn't getting that at school.



Angel_ryan
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15 Nov 2011, 8:27 pm

jmom05 wrote:
Like I said, I'm trying to understand my son as best as I can. I sort of understand when he is about to have a melt down, or when he needs to "cool down". I don't think his school understands this though. He is getting in trouble for making noises or crawling on the floor. I think he is feeling overwhelmed when he does this and needs a quiet place to settle. The school says they don't have this resource for him. I mean, even if they sent him to the nurse, or let him sit in the school office I think it would be better than nothing. It's just frustrating for me as a parent to know what he needs and then he isn't getting that at school.


Schools are the worst for not supporting AS kids. You really have to stand up for yourself and don't take any of the BS they give you. Constantly remind them that they are getting paid to make sure your child learns and develops healthy. Make sure that they are letting him participate in class activities especially when it's an interest, and if he is doing well in an interest try to encourage more material related to those interests. Then teach other subjects around the things you know seem too stick in his head. The best way to do this is with an EA. Educational assistant. If he is starting to have a meltdown the EA can take him to the library for 10 minutes and maybe read him a book related to what they are learning in class to get his mind off it. if it's something like math or counting and he likes dogs she could grab a book with some dogs and count them with him. Or she could get him to draw dogs instead of numbers in calculations. The child should never become completely isolated from what the rest of the class is learning because in the future he might feel segregated. Even if the EA gives him some blocks or something to play with during a meltdown while sitting in the cloak room it could be helpful. These are things that my mom is getting her EA to with my 5 year old sister. Steps should also be taken to prevent meltdowns like if he seems overwhelmed maybe give him a little break but try to talk about the subject with him,something like what do you like/don't like about Math, English Etc.



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16 Nov 2011, 7:44 pm

jmom05 wrote:
The school says they don't have this resource for him. I mean, even if they sent him to the nurse, or let him sit in the school office I think it would be better than nothing. It's just frustrating for me as a parent to know what he needs and then he isn't getting that at school.

Seriously, they can't find a nook or corner in the room where they could put a cushion or something so he could have a quiet space to re-group? I bought a big cushion and brought it in to the classroom so DS could have a space place to go when he needs to calm down. Its really not that complicated.



Step
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22 Nov 2011, 9:17 pm

My husband has AS tendencies, (undiagnosed), and is finally coming to the realization that his 11 year old has AS and serious sensory integration issues. My question is this, what do I do when my step-son's AS behaviors trigger my husband's and vice versa? Each individual's behavior seems to escalate the response from the other.

Over the weekend, this ended up in two massive melt-downs, one by my 11 year old step son (SB) who was hysterical and terrified of his father who was yelling at him to stop talking and SB kept repeating "how do I do that?" while literally trying to hold his mouth closed and completely hyperventilating...my husband meanwhile, was screaming profanities at the very top of his lungs while smashing SB's toys and even snapped SB's calculator in half, putting a serious cut into his own hand from doing so.

In this scenario, I feel a need to shield SB, who is very small, from my husband who is over 6 foot tall. My husband has never touched either of us in anger, but as you mentioned, if I were to try and grab him when he's in melt-down mode who knows what might happen?

I try to stay unemotional. I try to encourage him (my husband) to go to his room or to go for a drive or a walk and calm down but it's like he can't even hear me. I get very frightened. Afterward my husband feels horribly guilty and cries and claims to be a terrible parent. He isn't, he's a wonderful dad and these melt-downs are not a regular occurrence, still, I would love to learn a way to intervene non-aggressively in a positive way. I'm open to any suggestions.



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23 Nov 2011, 11:00 am

It sounds like you and your husband need to formulate an action plan. When all is calm and peaceful, you need to sit down and talk about a few things including, what his triggers are, how/if they can be avoided, how he can identify early on that he is escalating, what steps he can take to calm himself down or where he can go when a full meltdown happens so all three of you can remain safe. Some people here have discussed having a code word or a hand signal from the non-AS family member that says to the AS family member "you are escalating, you need to make a choice to calm down". I would highly advise that going for a drive NOT be one of the options for calming down. Anyone in an emotionally charged state should avoid getting behind the wheel of a car if at all possible. Taking a walk or going to another room in the house where he can be alone are good choices. It is important that the choice be arranged at a time when your husband is calm so that when he starts to feel the escalation, he can take a specific action without having to think about it. Once a meltdown starts, the person is no longer accessing the logical, rational part of their brain, they are operating in flight or fight mode, basically running on instinct alone. Trying to reason things out with them verbally at such a time is not likely to be useful at all.

You can apply similar things with your stepson. He probably needs to work first of all on recognizing the feeling in himself when he is getting agitated and the things that cause it. A lot of people use a method called How is Your Engine Running or some variation on it to help kids learn to recognize their feelings, label them and learn to make choices to calm down when they need to or ask for help from a trusted adult.



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23 Nov 2011, 12:55 pm

An adult who is a parent MUST take responsibility for recognizing the build up leading to a meltdown, and removing himself from the situation before meltdown happens. Taking a walk is a good idea, and Bambaloo posted well on how to set this up with your husband. I can tell my husband any time, "you should take a walk," and even if he doesn't take that action, he WILL remove from the situation completely, usually outside the home (I don't like him driving in that state but the gym and his office are all less than a mile away, and he seems to safely manage the short drive if he chooses). After all these years, I know the tell tale signs even when he doesn't.

I know it's a tough thing to ask, but when you have kids you make a choice and take on responsibility. Hopefully your husband recognizes that and will be willing to step out.

After all, it won't aways be a one way street, but I have my quirks, too, and there have been times my husband has told me to remove from a situation. Every parent has to accept that sometimes they just aren't in the right space.


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Step
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23 Nov 2011, 4:04 pm

Thanks to both of you for the excellent suggestions. We've tried to work with our son regarding recognizing changes inside and we're getting better at dealing with that. With my husband, it's easy to recognize when he's getting "flooded" or overstimulated, but it's not easy to recognize when he's going to have a melt-down. One does not necessarily always lead to the other. We do have a safety word, but in the heat of the moment, I forgot all about it. We did meet last night to discuss what happened and he agreed that I have the right to step in at a point before things get bad. We will ask our son to take a 5 minute time out, and then once he's in his room, discuss if my husband also needs some space or to remove himself from the situation. I notice the melt downs happen around homework time, especially with Math. My step son is in Advanced math, but he has a hard time showing his work and gets very angry when you remind him that he needs to do that because he doesn't understand the need to do it. He also doesn't understand why he's not allowed to use an online algebra calculator to do portions of problems, since he's already learned how to do that and just thinks of it as a convenience...but his math teacher does not want him to do that and he doesn't understand why and so gets very belligerent.

Unfortunately, the math he's doing at 11 is already beyond me, and my husband is the only one who can help him with it. It is very easy for my husband so he gets frustrated that our son doesn't instantly understand how to do the work. It's a tough situation because things can escalate very quickly. I would love it if my husband could remove himself from math time, only his help is generally needed. Anyway, you have given me some additional avenues to try. We will set up the "if it does enter melt-down" plan and I agree, driving probably isn't the best idea, only that's something my husband often does when he feels over stimulated...but overstimulated is not the same as a melt-down, and you're probably right that driving in that state is a very bad idea. Thanks again!



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23 Nov 2011, 4:32 pm

Step wrote:
My step son is in Advanced math, but he has a hard time showing his work and gets very angry when you remind him that he needs to do that because he doesn't understand the need to do it. He also doesn't understand why he's not allowed to use an online algebra calculator to do portions of problems, since he's already learned how to do that and just thinks of it as a convenience...but his math teacher does not want him to do that and he doesn't understand why and so gets very belligerent.



Ah, the not showing your work issue! My son went through that, and felt similar. Waste of time, plus writing is literally painful for him, almost torture. His eighth grade math teacher finally said it in a way he related to, and that was that.

So I asked my son to chime in here:

There are three reasons math teachers want you to show your work: 1) to ensure you use the method/algorithm properly 2) to ensure you're not copying 3) because its all you do in geometry.

I think I'll add that some of the most essential math problems society faces have intuitive answers, but the difficulty is in proving those answers. Really understanding the process and the steps is required to KNOW an intuitive solution is "the" solution. As math gets more advanced, there is a very strong shift to process over solution.


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lovelyboy
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24 Nov 2011, 10:45 pm

Regarding the maths....my son is only 8 yr old and already struggles to write the sum...he just want to give the answer...
The OT and ST now said that part of the problem for some AS kids with the steps in maths is the prosessing of information and then putting it in sequencial 'words'.....
They are going to start working on this next year to TRY and prevent math problems from grade 4 up.....
Don't know if this makes sense? Just thought that maybe if it can be help from an OT or ST side...it's another idea?


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9of47
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28 Nov 2011, 7:34 am

Got other things to add to the "what not to do" list:

1. Don't ever hit or scream at the child.

Although everyone here probably thinks this is obvious, my parents (who never thought my behavior was anything but me being a b***h) would verbally and physically attack me during a meltdown. This not only made it worse, but it also made my meltdowns more violent. When I was a little kid I would cry a lot, later on I would physically retaliate.

2. Don't ever deny them privacy if they need it.

Another thing my parents seem to enjoy doing. Whenever I asked them to go away when I was experiencing a meltdown, they would refuse and instead tell me off and go on about it being their house or that they made the rules. I could go on about this. What ended up happening was that the meltdowns went on for longer (what a surprise) and it was more painful for everyone concerned.

3. Don't punish them for having meltdowns.

My wonderful, loving parents thought I must love being unable to control myself, humiliating myself and experiencing the confusion and turmoil, so they decided to punish me for it. So usually they would take away my books (my special interest) or hit me. Which would, surprisingly, cause me to be upset. If I was lucky and was sent to my room, all that would happen would be that I sit in my room, crying. Sometimes I would just think about how angry I was at them, other times I would emotionally distance myself from them, at first things like pretending that I was adopted. Later on I would begin to not acknowledge them as my parents. In a way I focused on bringing up myself, trying to act as my own parent. In fact, if there was a way for a kid to live alone and look after itself other than homelessness and lack of education, I would have tried it.

If you're not doing any of those three things (or avoiding doing it), consider yourself doing a good job. It's much less likely that your kid will ever become a fraction as emotionally scarred as I am. Seriously, the fact that you recognize your kid's behavior for what it is and on this thread trying to figure out the best ways to handle your kid's meltdown... your children are damned lucky to have you.



LilFlo
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22 Oct 2015, 7:45 am

Thanks for all the tips and suggestions. I deeply wish my mom and her close circle would understand that.
Sadly, my mom is scared and get panic attacks seeing me during my meltdowns. So, as a consequence, she does EVERYTHING she should actually avoid : yell at me, stay close to me, try to restrain me (physical contact included), ask questions, expect me to explain what's going on and what I feel + with proper speech and tone... etc... So I get more and more stress and pressure, I have no space at all to actually breathe and calm down, the meltdown gets a climax in which I will attack (verbally and physically) the person in front of me (in that situation, my mom, but it can also be someone from her close circle if around and doing the same "mistakes" if I can say it that way...)
We end up "fighting", pushing and hitting each others, crying, screaming ... and last time it happened, my mom screamed even outside that I was mad, that I was going to kill her, that she was scared, she couldn't handle more that situation, she cried for help and put herself in the victim position.
As a consequence, a neighbor and friend of my mom came and told my mom that she was so upset, angry at me, that I was going too far (she doesn't know anything about autism, meltdowns...), that I couldn't be autistic but rather schizo and convinced my mom who was in panic and weakness position that she should say "it's enough" and cast me out of home, AND send me to a psychiatric hospital for some time.
That neighbor succeeded in throwing me out and preventing me to come back for some days, she shouted at me, made me feel guilty, like the worst person on earth, made me see my mom's bruises etc... She accused me of being manipulative, a liar, a domestic tyrant, that she would do everything to protect my mom from me, that things would never get better between me and my mom, preventing any dialogue between us... and then I was out in the streets and here and there for some days, in my panic, with my fears, guild, unable to cope, eat, sleep or else... like a zombie, misunderstood, but still with hope to come back home and arrange the situation.
My mom has to learn and me too, we must work together and no one else has the right to interfere between us and send me out or to a hospital and stick a wrong label on me. No one has the right to bully and tell everyone around "look at that person, evil person, definitely not autistic but schizo, shame etc"... No one has the right to mistreat people like us already leaving hell during meltdowns. No one has the right to judge what is gonna be better or worse. No one has the right to let someone in panic wander in the streets.

Thanks to social help and the police, I have been authorized to come back home and that neighbor is forbidden to approach me and the house. Me, my mom and also my dad (who doesn't live with us) are now doing a family therapy which hopefully is gonna teach us how to communicate altogether, teach them about my particularities and how to respect my space and territory, how to avoid anything that would make a situation worse.
What I lived those days deeply shocked me but in the other hand, I see through it, the necessity for us to speak and spread awareness and acceptance more and more. The fight is not over but hopefully without the need for any kind of violence. I pray for understanding and respect for everyone's particularities, space, integrity, dignity; patience towards better communication. It's obvious that it takes time and work in unity. Out in the streets or enclosed in an hospital, how would that be possible ? We exist, there is no uniformity, we must learn from our differences and ways of functioning, nothing is better, none is better that the other, we must complete each other....