Looking to commiserate, have 3 nonverbal ASD children

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First off, I love them. Lets get that out of the way. I'm wondering if there is anyone on this forum who has similar children. I meet a lot of parents of ASD children that think their experience is similar to ours. I have a 7F, 5M, and 2F that are ASD, and its clear that the 7F and 5M have speech apraxia - they don't talk.

Its not just that they don't talk either - they are on their own planets. They refuse to wear clothes. You put clothes on them and they just take them off. If you try to stop them, they flip out and scream as loud as they can. Its a lot of screaming, every day.

So one of my coworkers was like, "oh yeah my son is ASD, I understand" then proceeded to tell me a story about his son said he didn't want to play soccer at school and instead wanted to play basketball. I'm like... ok yeah thats not the same thing (but didn't say it). His unsolicited advice to me was to "ask them what their interests are." Ok dude. We've asked our kids lots of questions and so far, have never gotten any response. Not even a nonverbal response.

They also reverted in potty training. There was a time when both of them used the potty but no more. They just go to the bathroom on the floor. We are cleaning poop and pee off the floor daily. We replaced most of our carpets with easier to clean surfaces to make it easier.

We have to have locks on all our doors - we have to control access to the house because they destroy literally everything they can reach. Complicating their potty training is that we can't let them have access to the toilet because both of them will literally shove everything they can find down the toilet. Last time we allowed access, my 7F (who was 5 at the time) took the back part of the toilet off and threw it down on the ground, breaking it.

Their rooms are disgusting and we have to lock them in at night to keep them in place. We have chain locks on all exterior doors to keep them from running away because the first chance they get, they will bolt outside and just keep running. We have had the police called about 4 times because of naked children running around the neighborhood.

My 5M son is like 80% of the work. He seems generally unhappy most of the time and screams a lot. He obsessively rips anything that can be ripped. So if he gets a piece of paper, he will shred it into bits. He does the same thing with electrical cords. He also obsessively flips lights on and off.

We have a house that is mostly empty of furniture because they destroyed it. We have one room that has two couches that is locked off that they are only allowed in if one of us is there.

I used to like to have fish tanks but they were obsessed with throwing things in the fish tank. They were throwing trash, food, etc - anything they could find. I had to take it down.

I am struggling because while I love them, I am having a real hard time liking them. I often sit around and think, "wow if I could go back in time and warn myself...." its a dark place.

I often worry a lot about what happens to them down the road. I try not to dwell on it but both of us are depressed about it.

The schooling options locally to us are unacceptable. They want us to put them on a bus and have them go miles away. Yeah right! They would rip off their clothes, poop or pee on the bus, and then run away as soon as they could.

I'm convinced we need to move someday to literally be across the street from an acceptable school. What worries me about sending them to school is the data I've seen show that nonverbal children are targeted by sexual predators because they know they won't talk. I saw some figure that about 20% of nonverbal children are sexually abused by school staff. Thats not even abuse in general - thats targeted by school staff. So how am I supposed to send my kids to a 20% chance of being sexually abused?

Thats my rant. I guess what I am looking for is someone else in the world to commiserate with. I believe they can be something someday, but it will take them a lot longer than everyone else. I don't even really want advice because I think its useless (sorry). I just would like to find someone out there in the world who has similar kids who "gets" the situation.

We get judged by other parents and adults so much. One parent even blamed their nonverbal traits on us giving them iPads!

best get it documented somewhere of these actions that your children engage in (CYA Legally). Am so sorry you are in such a tough position. You dedication is just lovely..My younger sister i grew up with was Non Verbal .But my mum never quit God bless her. But was pretty much required to be in each others presence in order to make things work.
But unfortunately , in my time there was no "spare the rod spoil the child" thinking .Mother and Father did not tolerate bad behaviour of most anykind reinforcement through pain .And eventually my sister got used to wearing clothes , as it became possibly the only time in my sisters early days, that she recieve positive attention when dressing by my mum..Then dinner or breakfast was her only option when she was hungry . Think mum tried trading treats for positive behaviour , then discovered years later that,Sis was extremely adept at sorting out were the treats were hidden. But My mum and sis experience was very much a one on one interactions .After a fashion She would keep her clothes on ,And eventually got the idea of wearing clothes meant she could go outside ,i think because she started to understand difference between being cold or warm.And tons of negative reinforcement by mum and dad .Mum had had enough and went to seek out medical help. In those days it was powerful tranquilizers . Which sad to say gave my mum some more control over her daughter , but might have been necessary . But people did not understand about any person getting a tolerance to meds . But it did help get sis more used getting alittle bit of a pattern , like wearing clothes and eating . Patterns . Eventually as my sister became used to physical violence in order to get compliance To her adjusting
To some sort of somewhat more normal behaviour . Caused her to start reacting with violence to situations , she may have percieved as threatening.As she got older . Think my oldest brother may have been molesting her , during times my mother included tranquilizers in her meds , in sis 's diet. Might consider a child may get used to using negative behaviour as a method of getting any type familial attention
Nowadays there are many natural tranquilizers that occurr naturally in many foods and optionally herbs .
She did get calmer later into her teens oddly enough.And showed some incredible abilities through much positive reinforcement in doing jigsaw puzzles , started with 6 piece , eventually progressed to 1000 piece puzzles, she would sit on the floor and do them in one hour...! And went to a special school for severely developmentally disabled As mum got very old Sis was more than could handle and eventually got placement into a group home. After paying much money to get a more timely placement,Otherwise wait in line to get placed and Eventually mum being too old to care for her. Mum took me to a McDonalds one day ,where somehow along the way she got employment cleaning the dining area. Think because i kept bothering her about my sisters safety.
Bless you for caring for your children, " hang in there"

People in the Lyme disease community have associated a high concentration of Borrelia Burgdorphi,and other tick borne infections in the bloodstream of all autistics tested, with reports of improvement in their childrens behaviour using their more advanced treatment protocols ..Further more often others have made claims and shown videos of improvement in their children by using a treatment of very strong pulsed magnetic energy . Especially applied over the left prefrontal cortex area on the outside of the head..
Sometimes personally think there maybe repeated erratic short circuits in the nervous system ,due to a Lighter density of insulation betwen some of the myelin sheaths between neural wiring , Which may improve with time and maturation of the nervous system? My impression of this short circuiting might be amorliated by application of a cbd oil called "Charlettes Webb" which apparently help many very young children control profound seizure disorders.
These a just tidbits of culmination of years of reserch . ( Medical Disclaimer: these are only my own Experiences)

Wow that's very difficult. Hope the above advice helps

His sis got placed into a group home. Not exactly what I'm aiming to do here. It seems people either say "oh just try taking them to speech therapy" (we do by the way) to "they are going to need lifelong care."

Not many people are saying "yeah with some dedication they can become something."

I guess I will have to write a new script!

Very sorry to hear of your difficult situation. I'm glad to hear of your dedication to helping your children become something.


That is indeed a concern. I would hope that any decent school would have a child sex abuse prevention policy. In my opinion, a sufficiently robust policy would include not just being vigilant about whom they hire, but also never allowing any adult staffer to be alone with any child. In any case, sex abuse prevention policies are an important thing to ask about when considering any school.

Anyhow, if you feel inclined to write about this, I would be interested to hear about any other ways you've tried to help your kids learn to communicate, besides speech therapy.

As you are probably aware, there are various methods for teaching nonverbal children to read and communicate by typing. (Some of those methods are highly controversial.) Have you tried any of those methods, and, if so, with what results?

Note to other readers: For at least some (though not all) nonverbal children, speech is impossible due to motor apraxia, and writing/typing is difficult for the same reason, but more doable than talking.

Hi - I have been precisely where you’re at with 3 children and am now out the other side … I did what you are now doing & found a way forward thanks to a forum in Australia. Very difficult to talk about due to the trauma involved, exactly as you’ve mentioned. Will give you some guidelines here, shortly. You are by no means alone. X

Can share some guidelines that I sincerely hope will help.

hmm.. well apologies , that did not seem well recieved .???????.. Nor was it ...!

You will never essentialy be “ok” after a lifetime of what you have been through, let me be clear, even at this relatively young age in your marriage & lifetime. But, if you are an absolute “carer” of all that becomes of your children, then THEY are what truly matters, as is your family as a whole.

Please take from this, whatever might assist you …. Otherwise contact me via private message as this life has been nothing but hell & my only wish is to help others who are where my family once was.

http://www.aspie-editorial.com/behavior-management-part-1/

http://www.aspie-editorial.com/behaviour-management-part-2/


I have raised 3 children on the spectrum(from non-verbal) & have quite literally been to hell & back & am wanting to help. My children(adult now) are everything to me & doing wonderfully. From what you write, everything you say is the same as what I’ve experienced. Positive outcomes are possible, and I’m wanting you & your wife to know that you are not alone.

Speech therapy did not help my children. What helped my 3, was having me use word cards, books & home-made books depicting particular concrete words & meanings,relevant to our lives.

Jakki, your input was “vital”. X

Thanks! Let me know how your kids are doing I am curious. Have you ever seen the movie "Its not about me"? That movie gives me hope.

No no not at all, I just got sad thinking she was molested and went to a group home. Those are my worse fears for my kids.

My eldest went on to have a share in his own business, but this did not end well. Our children on the spectrum all too often fall under the influence of manipulative narcissists. Sadly, this is a common theme. You learn soon enough, just how prone to narcisstists, those on the spectrum are. Essentially, they are prey.

We can protect only so much.

I moved from Australia to the UK. I worked in Austalia, the UK, & the USA with autistic children. I wound up teaching how to train teachers in the US, how to achieve calm in schools, where severely, non-verbal autistic children presenting with behavioural disturbance, might bring about a calm “learning environment”.

I’d been working with children from a relatively young age myself, having been mute due to the loss of my mother at 5 yrs, & other “goings on” thereafter, that led me to wanting to create a safe environment for all children in my care, from the time I began working with children.

I wound up home educating my youngest. Money was no issue in raising my children, though I grew up in a “poor” family myself in Brisbane, Australia, having lost my mother at the age of around 5 yrs to cerebral hemorrhage, as I sat on her lap. Even as a mute little girl, I was expected to grocery shop weekly for my 5 siblings & father, & doing laundry, ironing, cooking from a very young age. I was able to retire early, due to having my own business & investments.

Importantly, you asked for my children’s outcomes. To put it simply …

Eldest son … now 37yrs … Now a woman … had been targetted throughout life as “different”. Very attractive visually, model-like. Cannot even begin to go into detail online for all my son/now daughter went through & still goes through to this day. I support “her” to the hilt, needless to say. Thisi involved an International move, then a move from public to ridiculously expensive private school move in the UK. There is quite literally a WHOLE BOOK of horrendous examples of bullying that occurred within that timeframe. BUT, my first born, is & was a survivor. There was a suicide attempt that was kept from me, until about 1 year ago(as an adult), which kills me to this day. My firstborn, in a nutshell, can fly planes, play guitar like No-one, compose, write lyrics & perform like Prince … can run his own business, but will always be having to keep safety in mind. London is a nightmare …

My daughter, followed in my footsteps. She too was mute. Very high IQ. Runs her own business, has a Masters Degree, working as a Therapist in schools & homes, as well as Military Families experiencing trauma. My daughter is helping others as much as my other two adult children are, but seriously blows my mind.

My youngest, I wound up home educating, after having tried mainstream, then private schools. I too, worked at both schools. Having been precisely where you are, I have to say, that it took finding the right person(sincerely a veritable needle in a haystack) to genuinely make life liveable from this point forth. Breaking point was assuredly reached… exactly as you describe … locked doors for safety for All). The taking it “one day at a time ordeal” that so few genuinely know about or have experienced. The “loving your children” but knowing that come what may, every human had a breaking point part! Thankfully, this part gave me the knowledge & confidence to make all the difference.

Things such as … tone of voice, what specifically to do in order to prevent or control/bring about the calm afterthe storm of fullon volatile destructible meltdown. My and my daughter’s experiences in schools of autistic children & adolescents with extreme behavioural disturbance, has proven time & time again, how crucial presenting as “in control”, remaining calm, cool & collected we are, keeping a tightly structured daily programme, predicatable & reliable is.This is what basically “saved” my family.

My youngest(& ALL were basically mute/required speech therapy until providing my own form of speech therapy & teaching them myself), is now at a London University. They are all performers, have IMDB pages, having been actors/voice actors, directed films, singers/songwriters, performed at The Globe Theatre, with additional talents. eg unbelievable artistic ability & performing in Live events/In their own businesses, as well as helping others.

I sincerely say to you, never, ever underestimate the future abilities of your children. My family are all very close. We celebrate where once, celebrations like Birthdays, simply were not possible. When you feel like you can’t go on, please know, your children are worth it. You already know this. Right now, you’re going through the hardest of ages, the hardest of times. Please know, that this is truly temporary. As terribly hard as it is, please hang on in there. It does genuinely get better…

All 3 of my children live independently, in London. They all work & have studied at University level, in spite of earlier lack of speech/mutism. Mutism, as you may well have realised,in no way, reflects a lack of intelligence.

Your children will test you to the brink, but they need for you to be “calmly & consistently in control” … from the time they awaken, to the time to they go to bed. Routine & consistency is paramount.

That is a very interesting story and I found it encouraging.

I agree 100% about narcissists. My mother died when I was 6 of pancreatic cancer. I believe she was autistic and fell for my dad because he is a manipulative narcissist. She joined a convent and then left suddenly, and my dad was literally her next door neighbor. I don't think she knew what to do in life and he was there and had a career.

I am ASD and ADHD, although I think ADHD was and remains a stronger hurdle in my life. I've managed to get a career and am doing fine. I never met a nonverbal person before meeting my daughter.

My son was 2 and he had this app where you placed the US states in a puzzle and anytime you got one wrong, it would make a noise. I was impressed that by the age of 2.5 he could place all US states on the map without a buzzing sound. But its hard to convince others he knows that. Today, he gives no impression that he knows anything.

We are homeschooling as a default because the local school district wants us to bus them far away and that is a hard no for us. I work from home and my wife is home with them as well. My oldest daughter has a "spelling to communicate" class weekly and horse therapy. I don't know if we can afford to do much more because insurance only covers ABA and that is a hard no for us.

I definitely, definitely worry about my two girls falling for narcissistic men! I want to keep them close forever! But I know at some point they will be adults.

How well is that working for her?

(As you are probably aware, S2C is alleged by its detractors to be just a variant of "Facilitated Communication." Doesn't look that way to me, as far as I can tell.)

She does "S2C" (never heard that hah but will use that from now on in random conversations) as well as horse therapy. In the horse therapy they try to get her to give verbal commands to the horse. They told us in the horse therapy that she was saying commands, which I thought was a lie to keep us going.

My wife followed the horse and heard that in fact she was saying commands to the horse. Its a surprise because I cannot recall the last time I heard her speak in the house. If I had to guess, I would say that I haven't heard her speak in over 6 months. When she does, its usually saying colors she sees.

S2C is... well I don't know how thats going. My wife comes back and says "oh she (sortof) spelled ____ today!"

What has surprised me about S2C though and the horse therapy in general is that she is very open to being led by an adult that isn't one of us. That can be good or bad. I worry that someone could kidnap her pretty easily.

That's great!


So, she is capable of pronouncing the words? How clearly does she pronounce them?

Also, does she seem to understand words spoken to her?


Is she also receiving speech therapy? Or has speech therapy been tried with her and found not to work (or at least not orthodox speech therapy)?


Uh, yes, that's a worry.