Please - need help with autistic son

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Hi - please, I am looking for advice for my 11 year old son & others with experience with similar issues

My son has been formally diagnosed with autism, lower IQ (67) and ADD. Not sure if there is anything else we may be missing. He has been seen by 2+ psychologists (including on a regular basis), occupational therapy, math and reading tutors, pediatricians etc.

I am his dad - 38 yr old with bipolar 2 and likely some more mild depression and anxiety; on lamictal, citalopram. My maternal grandpa was diagnosed with bipolar 1.

My son is getting more challenging - not easier. 80% of his time awake he is a good kind boy.

The biggest problem we have is he absolutely 100% locks up with an inability to perform maybe 70% of days while getting dressed in the morning. We have tried to-do routine checklists, traditional punishments (taking away pokemon cards, etc), time outs, some mild spanking, etc.

This is taking a significant toll on our family and truthfully; breaking our hearts and driving a wedge in our lives, etc. This is also creating an inability for us to get him to tutors, school, church, etc. There is definitely some correlation between him not wanting to do an activity and this problem (for example; if he needs to get ready to go play, do something fun, go to grandma's etc; there is usually not a problem - but if it is for school, church then more likely that there is a problem). I am really hoping not to have to take him out of our home and place him in some type of a treatment live in center.

It is interesting because sometime he will have been dressed for hours, and when it is nearing time to go - everything becomes a problem. I am sure he has some clothing sensory issues - this is normally part of the problem (everything "feels weird" - pants too tight even though they are 2 sizes too big, shirts or collars too tight). He generally has developed a few favorites (even though for example with underwear a pack comes with 6 pairs - he will only wear one or 2) - he also does better with smooth clothing (Under Armor shirts, exercise pants - will not touch jeans). We have tried some specialty tight seamless autism shirts - really I don't notice a major difference with those.

He becomes wildly frantic and emotionally/mentally paralyzed; unable to take any action. He will sit there (I assume in an autistic meltdown); saying "I just don't know what to wear"; "I need help"; "Will you help me", etc. We attempt to help and 100% of the time everything gets refused - "I don't want to wear that" and so on after cycling through every piece of clothing (many times with annoyance, irritation, "you're dumb" for proposing it attitude; sometimes does things to escalate the issue to demonstrate his discontent with us; sometimes very mildly violent with us). If we try to force clothing on him; the panic increases; physical resistance - and immediately the clothing comes off.

Sometimes the only way out of the house is to grab some clothing and literally carry him out of the house and let him dress in the car - of course with sheer emotional panic and anger on his part.

I feel threatening with losing a toy, etc only really makes it worse; but me and my wife are only human and don't know what to do even after many hours of psychologist visits and such. For example today; after missing his reading tutor appointment and 30+ minutes of meltdown; I set a timer for 4 minutes; and told him to get dressed within the timer or he would lose his opportunity to go see the new Pokemon movie. Nothing happened (meltdown, "I don't know what to wear", etc). I finally had to leave to work (mom will take him to school) - he was in sheer panic - chasing me down our apartment stairs in his underwear - "don't take away the pokemon movie" - just waiting for the police to be called on us. Always looking back - I feel like the threats make it worse; but we don't know what to do. I feel he must have some significant anxiety issues; but they are not formally treated. 100% of the time; he sees himself as the victim, sees no fault in himself - we cause the issue; we are mean; bad parents, etc.

Please help or share any advice possible. Would love to know if you or someone you know has this problem and how to help.

Thanks

Welcome to the forum.

Firstly, a caveat; I'm not a parent. However, I was an autistic little boy many moons ago.

I think you're correct that punishments aren't likely to work. If this problem is due to executive functioning problems or extreme anxiety, then it's likely as bewildering to him as it is to you why he does it (I was in my forties before I learned why I have this problem). So it will feel like being reprimanded for something which he has no control over, and the perceived unfairness of this will just make him resentful, more anxious, and more avoidant.

I think it would be worth doing a little research into what is known as Pathological Demand Avoidance (PDA) <link>. This is a sub-type of autism which is characterised by dysfunctional anxiety levels whenever an external demand is placed upon the person, and an excessive need to be in control at all times.

The key to it, as I understand it, is to encourage the feeling that he has some control over the situation by turning demands into tempting choices, and for him to learn that successfully meeting other people's demands can reduce rather than increase his anxiety levels in the long run. Part of this, easier said than done, is to conceal your own anxiety about such situations, as it will fuel his. There is some good literature available about this on-line, including some useful guides for parents who's children exhibit this behaviour. Even if his behaviour doesn't meet all the criteria for PDA, I'm sure you will find some it useful.

Best wishes.

Last edited by Trogluddite on 07 May 2019, 10:34 am, edited 1 time in total.

Yes, I'd agree that punishment won't work. My mom had a very bad issue of totally losing track of time, even if we reminded her about what we were supposed to be doing on our trip out of town.

It could be that you are doing too much. He may need "down time" to recover from the help he is getting.

Yes I agree with this. I’m an adult and don’t attend church because of sensory problems. Punishment doesn’t work because he is not purposely challenging your authority out of lack of respect it’s a brain function difference. Sensory issues are painful. While I don’t believe those that have autism have broken brains I do believe that their brain works different then the Neural-typical experiences and this can be expressed as “broken” or seen by society as “broken.” If you were using your left hand when you were a righty you’d struggle a little. And to some you’d be seen as broken or deficient. When in fact you were forced to use your left hand. Well that’s what it’s like having autism. The environments he’s being put into are not natural to him.

I do empathize with your experience and I can’t imagine what your feeling as a parent. I can imagine you’ve had hopes and expectations for your son and your family as a whole. Its very noble to have such values for your self and your family and you seem to love your son very much. Based on what you’ve said you seem to be a contributing member of society, taking responsibility of your family and morally educating your kids.

My advice is (and you’re already doing this by posting on wrong planet) is reaching out to a supportive community who won’t judge your sons behavior. Put yourself in his shoes and figure out what it means to have autism and work with that. The environment that your son is in will not be friendly to him. Make your relationship with him a safe place.

Get on board on bettering the societal world to be understanding to the neurological diversities.

For more tangible advice grieve your son, redevelop new expectations of what it is to have a son with a different neurological function and finally create a new system that works for your son and family.

*** yes he maybe suffering with anxiety and some activities are less painful if it’s fun... it’s not selective responsibility.
- enjoying my hobbies make my world a little bit more tolerable- taking away my hobbies make my life less manageable
-and yes he can’t see that your doing the parent responsibility action because he may not have the mind theory ability to do so. Autism makes it difficult to see others perspective. Maybe when he gets older he’ll get better at perspective taking. This maybe a skill you and a specialist will have to teach.

- as to the assisted living I wish I knew more.
- I’m just sorry you’re at a place where that you feel overwhelmed and have to make some difficult decisions

I hope this helps and everything works out.

Instead of using punishments, implement reward systems. Things he genuinely likes are given as reward for performing appropriate behavior or tasks. You can use tokens to exchange for special activities or toys he would like to do or play with.

Hi. Sorry about this. You have a really big problem, especially since your son is entering adolesence, it can possibly get worse. This is your window to change things right now. I suggest to try to look at the situation not as a problem specific to autism but rather of family dysfunction as this opens a window to a more comprehensive point of view, as obviously with all of the understandable stress and difficulty of raising this child, certain family dynamics can develop and become crystalized. This is not to deny your son's autism. I just don't think it is a productive as it may superficially appear to try to process this situation entirely from just the autism angle.

This is going to be a little difficult to explain but I will try: Everybody needs to do things they do not want to do, which, of course, you understand, and this fact is what you need your child to accept from you, that ultimately the experience (food) you are asking to accept is good. but in order for him to accept/digest the pain that comes with the ultimate pleasure there needs to be some kind of inner reward. Do not think of helping him in terms of outer reward. Imo this is maybe one area where you are slipping up. Not comparing your son to a dog, but there are basically two ways to train a dog to sit---one by giving him a treat for sitting (which approach is imo very weak) and another by voice tone. When you say "gooood to a dog in a certain tone of voice, then he is connected to you from his inner self, from his heart. It is a matter of self esteem and also of belonging. This is the beginning of some potential feedback from me, but I will wait to see how it comes across to you--if it makes any kind of sense-- before I go further. So if this message resonates, come back and give me some more feedback. This all must be very difficult and frustrating for you.

To conclude this particular message, start now by attempting to strengthen the bond between yourself and your son. The time frame here is of radical importance. You need to try to strengthen the bond between you and make a different kind of imprint before he enters into adolescence, so the next year is an important window. Discuss with him his experiences at school, both the good and the bad, and really listen. p.s. Re your son's tested IQ, usually most people, meaning anyone, are smarter than we think:-)

Church or school can be a torture due to noise, light, smell and crowd that people without sensory issues may not even notice. There is nothing strange about resisting going to a torture place, is there? The sole thought of it may trigger paralyzing panic.

What does your son like? What is he good at? What are his strengths?
Building on one's strengths is the best strategy to raise a happy autistic with meaningful life.

"The biggest problem we have is he absolutely 100% locks up with an inability to perform maybe 70% of days while getting dressed in the morning. We have tried to-do routine checklists, traditional punishments (taking away pokemon cards, etc), time outs, some mild spanking, etc."

None of that is going to help, remember he isn't trying to be difficult, he is also having a hard time. One of my suggestions would be talking to him about why, at a low stress time. A suggestion I would have is to find an outfit the day before so it isn't so much a time based stresser. Also, with outfits he consistently likes, buy a lot of the same thing so you know it is comfortable- that's what I do.

Don't make you kid out to be an enemy here, I repeat, he is having at least as hard a time if not harder.

A book I like is "The Explosive Child : A New Approach for Understanding and Parenting Easily Frustrated, Chronically Inflexible Children"

First off since this is your first posts - Welcome to Wrong Planet.

I am not sure I can help but here are a few suggestions. You said "My [11 year old] son has been formally diagnosed with autism, lower IQ (67) and ADD." From my perspective I am an Aspie or High Functioning Autistic (HFA). Your son is a Low or Medium Functioning Autistic. So from my perspective, I feel the proper approach is to transition a LFA or MFA into an HFA. That would be a first step. The only book I came across that looks at this approach is a book by Jason Lu titled "Eikona Bridge". He is an Aspie parent who has two children. In my opinion he has one of each LFA and MFA and he has helped them make that transition to HFA. So I consider his insight to be very valuable. Will his techniques work in your case? I don't know! You son is 11 whereas he began working with his children from day one. The problem is that there is an explosion of brain growth in the early years and then it slows down and stagnates. By 11, your sons programming is somewhat set in concrete.

The next book I will suggest is a book by Peter A. Levine called "In an Unspoken Voice". Although many people interpret the problems with Aspies or HFAs to be one of behavior and prescribe a multitudes of prescription drugs to treat these behavioral problems, it is my belief that the main problem is stress and not behavioral. If you focus on venting stress successfully, the behavioral problems will simply melt away.

So how do you vent stress? The brain is composed of many components. It is not just one brain but several processors working somewhat independently. The middle brain is described as a fight or flight response. When the brain perceives a threat, it triggers a release of a cascade of hormones and chemicals to energize the body to prepare it to either flee or fight. In humans the outer brain is a social brain. Because of social norms, this brain can cut short a fight or flight response. If this happens, the unused stress chemicals and hormones are stored in the nervous system and muscles. These need to be purged or else over time they will push the body into a distress state and into trauma. If your son is in a meltdown state, he is already in a type of trauma. So the approach to treat PTSD will be effective to control the symptoms that your son is experiencing.

So with an understanding that the stressors release chemicals in the limbs, what are effective ways to vent stress energy in the limbs. First off, a person has 5 limbs, not 4. These are your two arms, your two legs and your neck.

The middle layer of the brain within the Sympathetic Nervous system controls the “fight or flight response”. When an individual encounter a threat, they either flee or attack. Unused stress energy builds up in your muscles and nervous system. This stress energy needs to be purged or it will slowly damage your body. This can be done by exercise but there is a secret here. Most exercise only reduces stress for a few minutes or hours. You need to purge this energy so that the effects last for days, week, and months. In order to do this it requires an extreme vent. You need to simulate being chased by a tiger, literally chased by a tiger.

An example of exercise that will purge deep stress (exercise in which maximal oxygen uptake is 100%), is to perform ten 6-second maximal sprints (a 50-yard dash), running like a bat out of hell with a 30 second recovery between each sprint. [This emulates the flight response in a panic.]

A similar approach can be used to purge stored stress energy from the arms long-term. Use a punching bag, speed bag or even a pillow as a target. Strike the object as fast as you can and as many times as you can in 6 second burst. Move your arms/hands so fast that they become a blur. Perform ten (6-second burst) with a 30-second recovery time in-between. You don't need to punch the bag hard, a light touch will do. It is the intensity and speed that counts.

The neck is a fifth limb. Many animals have two arms and two legs and one other extremity, their neck. They use their neck, vocal cord, jaw and teeth both offensively and defensively. Lions roar, bears growl, dogs bark and wolves snarl. The sound produces fears that can immobilize their prey. Herd animals will use vocalization to alert the herd of the predator’s presence. Many times it is the jaws of a predator that will rip their prey apart.

One needs to vent the stored stress energy in their neck muscles, vocal cords, and jaw. The best way is to scream at the top of your lungs several times. But this must be done in a socially acceptable manner. Never scream at a person. I live in the rural countryside and my dog is a free-range dog. When it is mealtime and my dog is up and about; I call my dog very loudly.

I yell so loud that I can hear my voice being echoed back to me from nearby hills and mountains. My voice carries about a mile. The call is so strong that it borders on a roar. It is a very good feeling. It gives me a sense of great strength, like I could split a mountain in two just with my voice alone. I feel strong to my core. It is a great stress reliever or normalizer. And it is socially acceptable in the countryside.

One might try howling like a wolf at the moon. There is an individual in New York City that howls at the subway cars as they pass by deep down in the subway stations. But there are other ways to scream in a socially acceptable manner. A singer can do this if it is a very powerful song. A barker in the county fair can do this. A fan at a rock concert can sing along at the top of their lungs. Some commuters sing along to the tune on the radio at the top of their lungs while they are driving down the road. A spectator at a sports event can do this in cheering on their team. Even a Girl Scout can practice barking in front of the local grocery store when she sells Girl Scout cookies. Or find yourself a soundproof room.

"remember he isn't trying to be difficult, he is also having a hard time."

Agree with most of your feedback, and yes, of course he is also having a hard time. but he may actually be somewhat consciously (semi-consciously) on some level 'trying' to be difficult. Imo this is very important to understand, as the op is very probably dealing with natural human resistance and also possibly mixed in with this there can be game playing which is an expression of hostility that involves an angling to be one up by getting the other party to react. So when the parent gets angry this could actually be perceived by the child as kind of pay-off. Yes it is dysfunctional but so easy for people to get locked into this kind of pattern in different social situations. I have been there.