Anger in Autism and teenagers-cross post

[MyLittleBears]

Anyone dealing with this? My ds was diagnosed with HFA at 14. He never had meltdowns as a little guy or tantrums, ever. He was the happiest, sweetest little boy you can imagine, so much so that I did not suspect he was on the spectrum until he started having educational difficulties. (Okay so looking back their were a few social clues but he was my first so I chalked it up to quirkiness.)

 

Now he seems to be having anger issues. He will have disagreements with younger brothers and fly off the handle. He storms out of the room an comes to me later saying he does not know how to dissipate his feelings. He has never flown into a rage or anything but he tells me he feels like it. He is very good at controlling himself and will just go into his room to hold his cat. It seems to be the only thing that calms him down a bit. He has been coming to me lately with tears because he hates feeling like this. I don't know how to help him.  Any suggestions? Books?

 

We are going to a naturopathic doctor so I believe we are doing what we can nutritionally. Now I'm wondering if he should get his vitamin D levels checked. It only started happening lately do could it be a seasonal thing?

[prairiewindmomma]

therapy

[sbgrace]

I'm using Zones of Regulation with my nearly 12 year old. It's supposed to have a long age range (young to high school) according to the website.

 

I wonder if Cognitive Behavioral Therapy might be better in your case though. Because it sounds like he can regulate himself pretty well, but he doesn't want to feel it in the first place. I'm assuming it's probably hormonal. So he'll likely need to work on how he thinks about having those feelings in the first place even more than discovering tools in how to handle them. A good CBT therapist could probably tackle both with him based on what you described.

[8filltheheart]

Unfortunately, yes. 14 is about when it started. We had to have him institutionalized when he was 16 and even sent him to a boarding school for a semester. We moved him out of our house inOct bc he was stressing out his younger sisters. This was published about the time we institutionalized our ds. He was not this extreme, but it also demonstrates hat it is not a unique issue.

 

http://www.salon.com/2009/03/26/bauer_autism/

 

ETA: his anger issues are not as bad now in his 20s, but he still over reacts. We tried therapy, meds, but our ds struggles severely. He was a happy child with a tender heart. Hormones wreaked havoc with his personality. Interventions are vital for a family's well-being.

Edited February 8, 2016 by 8FillTheHeart

[KSinNS]

Sounds like he has a good coping strategy (leaving, hugging cat). Tears are one of the better possibilities when dealing with overwhelming emotions, so right away I would support his current strategies, and make sure he has an exit when the going gets tough. And the brothers leave him alone. And let him know it's okay to cry. After that a psychologist or zones could be helpful.

[sbgrace]

Unfortunately, yes. 14 is about when it started. We had to have him institutionalized when he was 16 and even sent him to a boarding school for a semester. We moved him out of our house inOct bc he was stressing out his younger sisters. This was published about the time we institutionalized our ds. He was not this extreme, but it also demonstrates hat it is not a unique issue.

 

http://www.salon.com/2009/03/26/bauer_autism/

 

ETA: his anger issues are not as bad now in his 20s, but he still over reacts. We tried therapy, meds, but our ds struggles severely. He was a happy child with a tender heart. Hormones wreaked havoc with his personality. Interventions are vital for a family's well-being.

 

That's terrifying. What interventions? Do you have advice for someone seeing inklings of this type of entrance into puberty? My son recently got an autism waiver which gives him access to resources we wouldn't otherwise have.

Sheesh this is horrible.

[MyLittleBears]

Thank you for all the input. I will look into zones of regulation cog behavior therapy. I will also speak to his neuropych at his upcoming appointment. 

 

It does seem to be stemming from when he feels like he has no control, such as his brothers arenot sticking to rule of a game, when he feels misunderstood, or when he is not in control of the tv remote.

Edited February 8, 2016 by MyLittleBears

[MyLittleBears]

Unfortunately, yes. 14 is about when it started. We had to have him institutionalized when he was 16 and even sent him to a boarding school for a semester. We moved him out of our house inOct bc he was stressing out his younger sisters. This was published about the time we institutionalized our ds. He was not this extreme, but it also demonstrates hat it is not a unique issue.

 

http://www.salon.com/2009/03/26/bauer_autism/

 

ETA: his anger issues are not as bad now in his 20s, but he still over reacts. We tried therapy, meds, but our ds struggles severely. He was a happy child with a tender heart. Hormones wreaked havoc with his personality. Interventions are vital for a family's well-being.

 

 

:grouphug:  :grouphug:  :grouphug:

[Guest]

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Edited February 10, 2016 by Guest

[Guest]

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Edited February 10, 2016 by Guest

[MyLittleBears]

Thank you, thank you for posting. I had a feeling there was more to the story.

Edited February 8, 2016 by MyLittleBears

[Guest]

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Edited February 10, 2016 by Guest

[8filltheheart]

That's terrifying. What interventions? Do you have advice for someone seeing inklings of this type of entrance into puberty? My son recently got an autism waiver which gives him access to resources we wouldn't otherwise have.

Sheesh this is horrible.

 

Well, our experience is not one you want to emulate.  It is full of mistakes and failures.  I can share our story, fwiw.

 

Our ds was little during a time when Aspergers was basically unknown (the label didn't even exist in the US until 1994. By that time he was 2.)  He had lots of issues, but none of them fell under any single label.  When I had him with me during one of his younger sibling's dr's appts, he freaked out when they were getting a shot.  At that point, our pediatrician started talking to me about autism.  (He had an autistic dd.)  I can't remember exactly how old ds was, but I think he was around 9.???  Anyway, we went to specialist after specialist and no one would say he was on the autistic spectrum.  

 

When he was 12, we moved.  That move triggered massive behavioral problems. Most of them manifested themselves in OCD behaviors.  He started washing his hands 100s of x per day.  The counselor we took him to was not much help.

 

By 14, he was extremely obsessive.  He would draw the same picture for 20+ hrs per day.  Any interruption of his drawing caused major reactions (stabbing his pencil into the wall, kicking holes in his wall.)  When he decided he wanted something, he would not take no for an answer.  He would ask over and over and over.  He would not remove himself from me....I had to remove myself.  One time he wanted to take a dance class with a girl he had an infatuation with.  We had already registered and paid for him to take another class, so we told him no.  He stood outside our bedroom door all night long asking over and over.  He finally kicked a hole in our door in his frustration.  

 

At this point he was in weekly to twice weekly therapy sessions. We went through an alphabet of labels....everything from ADD, OCD, ODD, high anxiety, bipolar (which none of us ever agreed with).  He was put on med trials. The mental health options in our community were abysmal.

 

We moved to a different state when he was 16.

 

Up until 16, he never exhibited any physical reaction toward us.  Then at 16 he became obsessed with the computer.  We locked the computer with a password.  When I wouldn't give it too him, he started chasing me around.  He chased me outside while I was carrying our then youngest and he shoved me onto the ground.  That was the night we had him institutionalized.  he was in the hospital for a week.  When they released him, they put him in anger management classes.  It was through that therapist that someone (other than our pediatrician who still maintained he thought ds was  autistic and we agreed)  finally mentioned autism.  Ironically, the therapist thought I would be upset by saying that is what he thought was the issue.  In reality, I burst out laughing b/c we had spent 7 yrs trying to get someone to listen to us, only to be continually told that he was too verbal and could talk about things other than the motor speeds of washing machines (actual conversation with a therapist in our former state) to be on the spectrum.  (We had also been told that his other behaviors were not obsessions or compulsions.  Only being obsessed with germs was an obsession.)

 

The anger management therapist pointed us to another therapist where he his testing definitely placed him on the autism spectrum.  He was diagnosed as Aspergers with comorbid, ADD, OCD, ODD, and high anxiety. We had new counselors, a new psychiatrist, more drug trials.  His behaviors at home kept disintegrating.  It got to the point that it was hard to distinguish mentally just how abnormal his behaviors were.  He was melting down from anxiety, constantly.  The meds led to horrible side effects like curling up outside, carving 666 on his arm, sitting staring into space for hours, thoughts of suicide.  Our younger children started exhibiting stress.  One of our dd's would run and hide under the table, behind the sofa, etc whenever he started raging.  Her stress became so high that we had to find a solution to help her.  The only feasible option was to remove him from our home for a time to let her destress.  We sent him to an Orthodox boarding school for troubled boys in Alaska for 6 mos.  After the summer break, they refused to let him return b/c he was so difficult to live with.

 

By this point he was a sr in high school.  All of the support groups for Aspies were for little kids and focused on early interventions.  We were well beyond that.  We went to a support group for parents of autistic adults.  There we were surrounded by parents whose adult children lived in their basements living in their world of obsessions.  Some had multiple degrees, but they couldn't hold down jobs.  We stopped going b/c all it did was depress me.

 

That spring we found a program geared toward helping Aspies thrive in college.  We spent a small fortune for our ds to attend college with that group.  But even that did not work.  Our ds was gifted.  He was academically not on the same level as the other students.  He functioned on the same level in terms of social skills and real life functioning, but the academic part started to become a serious hindrance.  Then our ds started refusing to take classes that he didn't think were necessary.  He refused to take them just b/c they were required for his degree.  Eventually, we simply ran out of money trying to fund him.  

 

We have moved again.  He has been re-evaluated by another neuropsy.  Once again he was labeled Aspergers with multiple comorbid conditions. He refuses to seek counseling.  Now that he is over 18 we cannot make him go.  His anger outbursts are more temporary now, but he is still impulsive and his mouth is foul when he erupts.  He is not violent any more.  He no longer stabs walls or kicks things.  But, he still reacts in a way that resembles a 2 yr old temper tantrum.

 

We moved him into an apt close enough to where he can walk to work.  We pay all of his bills and buy his groceries.  But he is cooking for himself and doing his laundry.  He is creeping toward some semblance of adulthood.  But, it is much closer to the adult support group image than I ever even thought possible.  I had always thought our gifted ds would make his own way and be successful in a "more normal" way.  But we are rejoicing in the success of living in apt and waking himself up to walk to work all on his own. 

 

sorry for the novel.  It just isn't something that is easy to summarize in a few words.

Edited February 9, 2016 by 8FillTheHeart

[8filltheheart]

Thank you, thank you for posting. I had a feeling there was more to the story.

 

Back story or no, http://researchautism.net/issues/10/anger-aggression-and-autism 

Unfortunately some people with autism become angry and aggressive very quickly and find it hard to deal with. The speed and intensity of their anger can be extreme.

When feeling angry, they do not appear to be able to pause and think of alternative strategies to resolve the situation

"The rapidity and intensity of anger, often in response to a relatively trivial event, can be extreme." (

 

 

Edited February 9, 2016 by 8FillTheHeart

[Guest]

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[8filltheheart]

Sad! This is NOT the way to help parents find solutions.

 

I'm sorry about your experience with your son.

 

Would you clarify your meaning?  I took your posts as suggesting that the original article and his anger issues were only the result of his background and had nothing to do with being on the spectrum.  My point is that there are a lot of autistics who do struggle, some quite severely, with anger.

[Guest]

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Edited February 10, 2016 by Guest

[itsheresomewhere]

Puberty can bring on some changes.  Our ped asks us each visit as it really affects some kids with tantrums, outbursts, ocd, etc.  Ask for bloodwork to rule out any issues with vitamins, thyroid, etc.I also recommend CBT.  CBT is wonderful and does help. Don't be against meds if they are suggested as they are often just to help things in the beginning and not everyone stays on them. Just keep an open mind for them.

 

Disclaimer- I prefer holistic but feel there a good place for meds.

[Lecka]

8, I appreciate you sharing. Thank you.

[8filltheheart]

She also asked if anyone had ever dealt with it. I have. Fwiw, they aren't "scary stories" or blaming everything under the label of autism. They are some autistics' reality. The same as the adult support group full of families resembling the high unemployment and underemployment of Aspies. But most people only want to talk about the "Bill Gates" version.

[texasmama]

Anyone dealing with this? My ds was diagnosed with HFA at 14. He never had meltdowns as a little guy or tantrums, ever. He was the happiest, sweetest little boy you can imagine, so much so that I did not suspect he was on the spectrum until he started having educational difficulties. (Okay so looking back their were a few social clues but he was my first so I chalked it up to quirkiness.)

 

Now he seems to be having anger issues. He will have disagreements with younger brothers and fly off the handle. He storms out of the room an comes to me later saying he does not know how to dissipate his feelings. 

This is a pretty good description of my ds15, who is on the spectrum.  He was a pleasant, compliant child until puberty.  

 

I have put him on chelated magnesium and fish oil (both Carlson's brand).  I tried another supplement over Christmas break and took him off of those, and he became emotionally dysregulated again.  I put him back on the mag and fish oil, and within a week he was back to being pretty level able to manage his emotions again.

 

I keep his environment pretty steady and predictable and adjust expectations to fit what I know he can accomplish.  I do not walk on eggshells by any means, but I am aware of his moods and step in to provide help when he gets out of whack.  He does better with activities and not as well without things to plan his day around.  I feed him healthy meals regularly with an emphasis on protein and make sure he takes his supplements every day.  He is an athlete (competitive basketball) so he gets a lot of physical activity during the basketball season.  I let him sleep late when he can.  I give him plenty of time to wake up in the morning since he is slow to come around.  I do not personalize his rudeness, and I point it out.  We talk extensively about other people, their thoughts and feelings, and how they differ.  Essentially, it is all day therapy in one manner or another.  This comes naturally to me so it doesn't feel like work.  (I'm a therapist with a background in working with kids/adolescents.)  My son is on the high functioning end of the spectrum and most people would not know he is on it.  His most severe symptom is the emotional dysregulation, and the supplements really seem to help with that.

[Innisfree]

8, I would also like to thank you for sharing your story.

[Guest]

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Edited February 10, 2016 by Guest

[EndOfOrdinary]

8Fill, we need to be proactive not reactive. These kids, ALL these kids, need our help. They need solutions. Not finger pointing, or label pointing, or even statistics. Each situation is unique, just like the individual. They need practical solutions, just like I felt the OP did. I'm raising two, both on the spectrum. I don't look at the Bill Gates of the world. I seek guidance from the Temple Grandins of the world.

I think the problem with this approach is that it completely disregards the many things that Aspies do have in common. It creates "snowflaking." The idea that each child is a special snowflake is actually dangerous. It doesn't mean you have to trample the kid, but it does mean you need to be realistic. It also means that those supporting the child actually recognise many of the very real downsides to a social world accepting very non socially astute adult people. My brother is a weirdo. Not judgmental, not negative, not bad in anyway. He is a weirdo because he is an extreme outlier and needs to be directly dealt with in that way. It is flat out cruel not to.

 

My brother is a 35+ year old Aspie. He has never lived away from home, cannot hold a job well, and has real anger management issues. His relationship with my mother is codependent at best. It is non existant with my father who demanded that my brother recieve help in exchange for assistence. He will not attend therapy and cannot be made to do so as he is over 18. He has had only one adult job, placed by his university, with an EXTREMELY understanding boss. He hated it. His structured UPS job he had while in school, he loved and excelled at. For all intents and purposes, underemployed is the only thing my brother can hope for at this point. Whether this is sounding negative, scary, or what have you, it is reality. It is the reality of so many Aspie individuals. Had my parents OWNED that, my brother would have more than likely had a happier more productive life. Temple is great, but every basketball player does not become Michael Jordan. Most shoot hoops in their backyard.

 

In the same way, my Ds is profoundly gifted. Like not just a bit. He is a very non-normal weirdo in much the same way as my brother. Comorbid with that is anxiety and OCD. These directly stem from many of the nuerotic behaviors which happen to extreme outliers in our society. There are 7 traits which often manifest with extreme giftedness. Ds started exhibiting many of them before 2. Statistics helped me understand that. Talking and reading the stories of others helped me get it. The stories of how very similar my kid was to other extreme kids allowed me to see what the future might hold and adjust my expectations. Due to actively working on them, many behaviors are much better. Had I just not acknowledged that this is an active byproduct of his mental state and that of many PG kids, he would be a wreck. Dh just tells Ds angerly that he is "not being normal" and expects Ds to be "smart enough to make changes." Dh says my brother should just "pull up his boot straps. He will if he gets hingry enough." Both are ridiculous. Do not be owned by expectations or statistics either good or bad. Use the knowledge. But definitely don't shun it or hide from it.

[MomatHWTK]

It has been my personal experience that anger issues can develop into serious problems and need to be addressed seriously. See your medical professionals and make a plan. If you aren't scared of what could happen, get scared enough to get into the doctors and get the situation assessed. No one else is going to advocate for your child and once he is 18, your power to help is severely limited.  :grouphug:

[Storygirl]

Every person and every family is unique. Sometimes people have issues with anger, emotional dysregulation, and even violence. Some people with autism struggle with these things, and some do not. We need to face the truth; we need tools to address these kinds of problems; and we need to not blame the victims. Tragedy can happen to very good people who have done their very best. Bad things happen in good families. When we have problems, it's good to seek help.

 

 

 

 

[KSinNS]

Hugs, 8 and thanks so much for sharing your story. I really appreciate hearing the stories and advice of people who have walked this road before.

[8filltheheart]

EndOfOrdinary gets it. Temple Grandin found a way to excel in her world. Not all kids are as fortunate. Our ds's anxiety is his worst enemy. He cannot confront any hurdle independently. He needs someone else to hold his hand, walk him over the hurdle, stay a while, and only when he is familiar with that space can he function independently. Not all Aspies will be a Bill Gates, nor will all be a Temple Grandin. Unemployment/underemployment of Aspies is shockingly high, 80% by some estimates.

 

Our ds is severely underemployed. He is extremely intelligent, very artistically talented, and he works as a donation greeter at Goodwill. He wants to get another job, but we are very leery of that idea. Why? Bc Goodwill tolerates his unprofessional behaviors. Just last week another employee made him mad and he yelled at him and called him a foul name. His spontaneous outbursts would likely get him fired in most environments. He knows it is wrong. He called me right after it happened very upset. But, that impulse control to not react in the first place does not have a good filter.

 

Fwiw, my son has no "back story." We have 7 other very ordinary, quiet, even-tempered children. He was not raised in a house where voices were raised. He was not raised around obscenities or vulgar language. He certainly never saw anyone hitting things or punching things when they didn't get what they wanted. What he did have was overwhelmed parents who didn't know how to help him control those emotions in a constructive way. He also had Drs who didn't or couldn't help him either. Hindsight is 20-20. If we could go back and try different things we would. But up until he was 14, his biggest issue was more ADHD impulse type control problems. He was sweet and tender-hearted. He was a gentle soul. He was just very impulsive and very active. (The situation I described in the Drs office when he freaked out over his sibling getting a shot was bc he was so upset someone was hurting his baby. He didn't want his sibling to have any suffering.) In no way could I have foreseen where that lack of impulse control was going to take him. Nor did I have any idea just how angry he would become bc of his impulses. To make it worse, his anxiety levels have only increased going into adulthood. Being a child is far easier bc the world is somewhat controlled by your parents. Being an adult with high anxiety and poor impulse control is very difficult.

 

Fwiw, I refuse to have my son's life and experience be reduced to a "scary story." We live it every single day. He is a young man that I love dearly who just happens to have so many struggles and issues that it breaks my heart to watch.

Edited February 9, 2016 by 8FillTheHeart

[MyLittleBears]

EndOfOrdinary gets it. Temple Grandin found a way to excel in her world. Not all kids are as fortunate. Our ds's anxiety is his worst enemy. He cannot confront any hurdle independently. He needs someone else to hold his hand, walk him over the hurdle, stay a while, and only when he is familiar with that space can he function independently. Not all Aspies will be a Bill Gates, nor will all be a Temple Grandin. Unemployment/underemployment of Aspies is shockingly high, 80% by some estimates.

 

Our ds is severely underemployed. He is extremely intelligent, very artistically talented, and he works as a donation greeter at Goodwill. He wants to get another job, but we are very leery of that idea. Why? Bc Goodwill tolerates his unprofessional behaviors. Just last week another employee made him mad and he yelled at him and called him a foul name. His spontaneous outbursts would likely get him fired in most environments. He knows it is wrong. He called me right after it happened very upset. But, that impulse control to not react in the first place does not have a good filter.

 

Fwiw, my son has no "back story." We have 7 other very ordinary, quiet, even-tempered children. He was not raised in a house where voices were raised. He was not raised around obscenities or vulgar language. He certainly never saw anyone hitting things or punching things when they didn't get what they wanted. What he did have was overwhelmed parents who didn't know how to help him control those emotions in a constructive way. He also had Drs who didn't or couldn't help him either. Hindsight is 20-20. If we could go back and try different things we would. But up until he was 14, his biggest issue was more ADHD impulse type control problems. He was sweet and tender-hearted. He was a gentle soul. He was just very impulsive and very active. (The situation I described in the Drs office when he freaked out over his sibling getting a shot was bc he was so upset someone was hurting his baby. He didn't want his sibling to have any suffering.) In no way could I have foreseen where that lack of impulse control was going to take him. Nor did I have any idea just how angry he would become bc of his impulses. To make it worse, his anxiety levels have only increased going into adulthood. Being a child is far easier bc the world is somewhat controlled by your parents. Being an adult with high anxiety and poor impulse control is very difficult.

 

Fwiw, I refuse to have my son's life and experience be reduced to a "scary story." We live it every single day. He is a young man that I love dearly who just happens to have so many struggles and issues that it breaks my heart to watch.

 

 

:grouphug:  :grouphug:  :grouphug:

[Heathermomster]

8Fiil, what have you and your DH done as a couple to maintain your relationship with one another?  Did your DH ever struggle with your son's differences early on?  

[PeterPan]

8Fills, I really don't mean to pry, but is he on medications?  For the impulsivity and for mood stabilizing or both?  And is he currently receiving psychiatric counseling or mindfulness or group sessions?  I assume you have some compliance issues. 

 

I'm just asking, because I actually want to know if this is breaking through the psychiatric care or if he's non-compliant. This is pretty much the young, growing into it version of where we are, and it concerns me. In watching other family members, it took EXTENSIVE care to get the behavior under control, and compliance was an issue for many, many years.  That didn't mean it couldn't be gotten under control, but they couldn't at that time accept the help.  

 

I also think it's astonishing that anyone would try to blame home life and say it's the parents fault when this is a KNOWN issue, when even supplements by autism researchers include lithium, when Temple Grandin's books have whole chapters on medications, when many adults with ASD are out of the closet about taking multiple medications.  It's the BIOLOGY.  There was some recent study that found a gene (the C4, I have no clue what I'm talking about) that is affecting the grey matter of the brain in schizophrenia.  Well, hello, but that same gene is involved in autism!!  So let's not be so short-sighted as to blame parents for what is clearly turning out to be caused by a complex set of gene mutations.  And if your dc are not affected, well just bow down and THANK GOD, because for those who are affected it ain't pretty.

[chiguirre]

Comorbid conditions are very common with ASD. They're also really hard to tease out. We've been through this with GW. I'm not sure that psychiatrists have many tools to help this group of patients even though they want to very badly. They can try out meds, but it is a trial. They might work or they might make things worse. BTDT repeatedly with GW. We seem to have found a good mix for his current body chemistry courtesy of a one week stay in the county mental hospital. Or, it could be, that GW now realizes that if he hurts one of us, we WILL send him away. In either case, it's helped his anger management issues immensely.

 

It's helped us a lot to have GW in a therapy based program that functions as his school. He loves the structure, I love the respite and the reality check about how severe his behaviors are and what his possibilities are as an adult. However, for Geezle who is higher functioning, public school special ed has served the same function with no cost to us. Both programs are also heavily focused on job and social skills. Their goal is having kids able to hold down a job when they're 22.

 

What I've learned so far on this path is that professionals and most other parents seem to think group homes/sheltered employment or all in one facilities are a sign of failure. I wish they wouldn't. GW is severely disabled. He's also really big and strong. He cannot be out on his own in the community ever. Period. He is not safe. Not to others and not to himself. However, he's truly very happy with a set routine and a variety of activities. He likes to do chores, he likes to do group exercise, he likes communal meals. He is much happier when he is in a hyper structured environment. This isn't a failure for him, this is his happy place.

 

OP, Geezle seems more like your son. He is still sweet and very concerned about being a good friend at school. He is in puberty, but he hasn't reached his full height or started shaving yet so we're not out of the hormone woods. He has spent lots of time in social skills therapy and I can see the excellent results that's had for him. If your son hasn't done any therapy that's given him the tools to self soothe and avoid escalation, I'd look into that as a good first step.

 

Also, remember that NT teenagers can be aggressive and angry too. It's easy to forget that all teenagers have their sullen, angry moments and plenty of them break stuff or use punching bags, too. Some of them even get into fights.

[Tiramisu]

8Fill, we need to be proactive not reactive. These kids, ALL these kids, need our help. They need solutions. Not finger pointing, or label pointing, or even statistics. Each situation is unique, just like the individual. They need practical solutions, just like I felt the OP did. I'm raising two, both on the spectrum. I don't look at the Bill Gates of the world. I seek guidance from the Temple Grandins of the world.

 

Even Temple Grandin talks about getting thrown out of a school because she threw a book at another girl in a fit of temper.

 

Dear friends of mine had one of their dc hospitalized and put in a special program due to scary anger issues. The family is stable and loving. The child is in therapy and on medication now and it's made a huge difference.

Edited February 9, 2016 by Tiramisu

[chiguirre]

 In watching other family members, it took EXTENSIVE care to get the behavior under control, and compliance was an issue for many, many years.  That didn't mean it couldn't be gotten under control, but they couldn't at that time accept the help.  

OhE, I've found that GW is super compliant with his meds. He asks for them if we forget. They're part of his routine and he won't depart from the routine if he can possibly avoid it.

[MyLittleBears]

Who does cognitive behavior therapy? Is this a SLP speciality or someone else? We are mostly going through our private insurance but our SPL suggested trying the school system and seeing what kinds of services they offer. I am leery of this because we live in a rural area with a small school system (although we are about 50 min away from a two biggish cities) and I doubt they have anything in place for autism. I would be very surprised if they did.  Our other issue is that our homeschooling laws suggest we have to do progress reports every couple of month if the child has a developmental disability but our law defines DD as something that severely interferes with daily living. We do not have this so it has been suggested to me that this rules out DD and I honestly hesitate to give the school system the reigns.  His main issue is an impaired working memory and processing speed which we accommodate through homeschooling. The stress issue have only now popped up. 

[PeterPan]

OhE, I've found that GW is super compliant with his meds. He asks for them if we forget. They're part of his routine and he won't depart from the routine if he can possibly avoid it.

What a mercy!  You mentioned you think maybe psychiatrists don't have that many tools to help this group of patients.  I can tell you that, in my experience with a family member, when there's the funding, there is more than can be done.  My family member sees a psychiatric nurse practitioner weekly for an hour.  That has allowed them to talk through issues and get new perspectives.  I'm not sure how common PNPs are.  I know this one is the bees knees, and it's sorta like the difference between any other NP and MD, where they're going to slow down and have more time.  And that's every single week.  

 

The family member goes to group therapy sessions every day, Mon-Fri, very religiously.  They have classes on mindfulness and help them to carry it over at home.  Mindfulness, done for just 10-15 min a day, can up EF by 30%!!!  EF includes self-regulation.  So I'm saying when the lid is off the budget, when you're in a situation with unlimited care (not reality for most people, sigh, and you wouldn't want to go through what this person had to go through to GET that unlimited care), that's the kind of stuff they do.  Multiple hours of group sessions a day, mindfulness, and weekly PNP care.  And with that and enough meds that there are physical side effects (which no one wants for their 18 yo), this person is stable.  They can be gotten unstable, but for the most part they're stable.  

 

And I explain that, because to me it's like wow, we're not succeeding yet in our home with this mindfulness, but for this other family member it has actually been a really strong component!  Not the sole thing, but like this drip drip of techniques and things adding together to make a functional person.  And the PNP, ok, can we find a relationship like that, before 18, with someone this person can talk things through with and accept?  

 

I don't know.  Just thinking out loud.  I do think there is more, but I don't know how most people GET that more or get access to that more.

[chiguirre]

Back story or no, http://researchautism.net/issues/10/anger-aggression-and-autism 

 

 

Sad! This is NOT the way to help parents find solutions.

 

I'm sorry about your experience with your son.

If you click on the links on the menu at the left of the screen you can access a huge list of possible solutions and some clinical results. They're really extensive, but not immediately apparent unless you click around. The first page is just the introduction.

[PeterPan]

Who does cognitive behavior therapy? Is this a SLP speciality or someone else? We are mostly going through our private insurance but our SPL suggested trying the school system and seeing what kinds of services they offer. I am leery of this because we live in a rural area with a small school system (although we are about 50 min away from a two biggish cities) and I doubt they have anything in place for autism. I would be very surprised if they did.  Our other issue is that our homeschooling laws suggest we have to do progress reports every couple of month if the child has a developmental disability but our law defines DD as something that severely interferes with daily living. We do not have this so it has been suggested to me that this rules out DD and I honestly hesitate to give the school system the reigns.  His main issue is an impaired working memory and processing speed which we accommodate through homeschooling. The stress issue have only now popped up. 

You're talking about layers of things.  There are psychiatrists in our area who do CBT.  I've never looked for a psychiatric nurse practitioner (PNP) in our area, but based on experience with family I can say that would be good.  The school will have an OT or someone trained for self-regulation materials like Zones of Regulation.  They will have an SLP or someone trained in pragmatics and social communication.  These things would be complementary, not excluding one another.  They would all be good parts of a coordinated plan.  If you had the ps run pragmatics as part of their eval, it might be informative to you.  It might help you identify holes and go ok, we need some intervention here, or no what we've been doing is working.

 

As far as DD, in our area an ASD diagnosis does *not* immediately qualify you for DD services.  Call your local DD board or look up on their website what it takes to qualify.  An ASD diagnosis, at least in our area, does not get you there, and that's something quantifiable that you can find out the law on and know ahead of time.

[Storygirl]

One of the things that I need to figure out is what we can and should be doing privately to help with DS11's emotional regulation. He is in the process of getting an IEP, but he did not qualify for any OT (though they recognized weaknesses and suggested accommodations for fine motor issues), so he can't get something like Zones at school. And the truth is that he has very good, compliant behavior at school and no emotional regulation issues there. So they don't see the need. There are reasons he does better at school, including that his ADHD meds are in effect while he is there but wear off by the time he is home. But he also responds well to having a highly structured environment.

 

At home things are different. We see a different side of him. We have a need for improved skills. I think we need to either get him back into private OT with someone who can help him with something like Zones, or we need to look into CBT.

 

I'm wondering...DS11 is not self-reflective at all. He lacks meta cognition, or the ability to think about his own thought process. Will CBT help him with that? Or does success with CBT depend on the patient's ability to think things through? Does that make sense? Would it be good for shoring up that weakness, or will that weakness prevent him from being able to access the therapy?

 

I don't know anything about CBT at this point. I need to look into it more. I know there is a CBT provider on a list of psychologists that our pediatrician gave us.

 

ETA: DS11 has never been violent, but he has never been sweet, either. Or I should say rarely has been sweet. He has always been kind of an edgy person. Things can be challenging now, and I'm concerned about upcoming puberty and how it will affect him. And us.

Edited February 9, 2016 by Storygirl

[texasmama]

CBT is (mostly) done by psychotherapists and clinical psychologists.  You will be looking for an LCSW, LPC or Ph.D psychologist.  It needs to be one who is experienced in working with teens on the spectrum.  There are social skills groups run by professionals, but these are hard to find and expensive.  It may take some significant research to find them.

 

My son had a rough period this summer.  He refused interventions but realized the need to control his words and to demonstrate self-control around his emotions.  Re: his future, I don't see him taking a traditional path of going off to college, getting married, and having kids necessarily.  He is high functioning, understands social interactions and has self-taught normative behavior in his interactions with others because he does not want to stick out.  He does not have ADHD or OCD.  He does have some anxiety, but this has actually decreased as he has gotten older.  From age 3 - 12, he received extensive services (OT,PT,ST).  Playing basketball competitively has done more for him than anything I could have done.  He is on no medications at this time. I am open to medications in the future, if needed.  That would be an uphill battle with him, but he is workable given time to consider things.  His initial reaction to any change is always to shout NO.  He needs time to adjust to the thought of something new.  My son has friends.  He seems to attract boys his age who have a lot of feelings and sensitivity.  He is a good listener (via instagram messaging), and he gives good feedback and support when asked.  He doesn't understand their feelings or actions, but he acts in a kind, supportive manner.   He has an amazing work ethic.  He doesn't give up, even when he wants to or says he is going to.  He is not cognitively gifted.  He is an average-ish student who works hard.  He has a moral compass which is partially based on ASD rigidity.  He is a rule follower.  He is slow as molasses. 

 

He is much more dependent on me than my other kids were/are.  I read somewhere to use a 2/3 of the age rule when viewing ASD kids, as in "they are developmentally at 2/3 of their age".  So he is 10.  That's about right.  I have a 10 year old so I can compare an NT 10 year old to him.  They are at a similar level of need regarding structure, support, reminders to brush teeth, etc.  They lose things and forget things.  They expect to have meals placed in front of them and their laundry done for them.  My son is not ready to get a learner's permit.  He might drive at 18.  I don't know.  He realizes this.  He is welcome to stay with us as long as he wants as long as he is not harming others in the house.  I think it helps that we have a rowdy, sarcastic family.  Some of his rudeness just gets absorbed or laughed at.  We accept him, and I work with him in the ways I can in order to help him to achieve his goals, not mine.  I asked him if he wanted to "pass as NT" after we told him of his diagnosis last year - if he wanted me to help him to do this, to give feedback when he does something odd.  Mostly, he seems to know.  He is not an Aspie who bends your ear about his latest interest.  He is one who is painfully shy and quiet, standing off a bit and smiling shyly as he looks away. Social interactions and eye contact stress him.  He manages it, though.  He manages pretty much everything I've ever asked him to manage.  He did refuse to go for an evaluation for meds/other services.  But the immediate need passed and he saw that we were serious about him using self-control or getting help with this.  He engages in some physical altercations with his brother, but these are not outside the norm, and they have decreased in the past six months.  I am pleased with where he is at this point academically and socially.  I don't look too far into the future because I cannot predict where he will be.  We go one stage at a time.

[Guest]

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[Guest]

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Edited February 10, 2016 by Guest

[kbutton]

I would like to hear more about CBT too--the nuts and bolts. I have wondered what Storygirl is asking too about metacognition.

[Guest]

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Edited February 10, 2016 by Guest

[kbutton]

I think the problem with this approach is that it completely disregards the many things that Aspies do have in common. It creates "snowflaking." The idea that each child is a special snowflake is actually dangerous. It doesn't mean you have to trample the kid, but it does mean you need to be realistic. It also means that those supporting the child actually recognise many of the very real downsides to a social world accepting very non socially astute adult people. My brother is a weirdo. Not judgmental, not negative, not bad in anyway. He is a weirdo because he is an extreme outlier and needs to be directly dealt with in that way. It is flat out cruel not to.

 

My brother is a 35+ year old Aspie. He has never lived away from home, cannot hold a job well, and has real anger management issues. His relationship with my mother is codependent at best. It is non existant with my father who demanded that my brother recieve help in exchange for assistence. He will not attend therapy and cannot be made to do so as he is over 18. He has had only one adult job, placed by his university, with an EXTREMELY understanding boss. He hated it. His structured UPS job he had while in school, he loved and excelled at. For all intents and purposes, underemployed is the only thing my brother can hope for at this point. Whether this is sounding negative, scary, or what have you, it is reality. It is the reality of so many Aspie individuals. Had my parents OWNED that, my brother would have more than likely had a happier more productive life. Temple is great, but every basketball player does not become Michael Jordan. Most shoot hoops in their backyard.

 

In the same way, my Ds is profoundly gifted. Like not just a bit. He is a very non-normal weirdo in much the same way as my brother. Comorbid with that is anxiety and OCD. These directly stem from many of the nuerotic behaviors which happen to extreme outliers in our society. There are 7 traits which often manifest with extreme giftedness. Ds started exhibiting many of them before 2. Statistics helped me understand that. Talking and reading the stories of others helped me get it. The stories of how very similar my kid was to other extreme kids allowed me to see what the future might hold and adjust my expectations. Due to actively working on them, many behaviors are much better. Had I just not acknowledged that this is an active byproduct of his mental state and that of many PG kids, he would be a wreck. Dh just tells Ds angerly that he is "not being normal" and expects Ds to be "smart enough to make changes." Dh says my brother should just "pull up his boot straps. He will if he gets hingry enough." Both are ridiculous. Do not be owned by expectations or statistics either good or bad. Use the knowledge. But definitely don't shun it or hide from it.

 

I really like how you put this. I think we can appreciate our kids' uniqueness and find unique ways of working with them (along with proven, research-based strategies), but we have to continually think about the world they are going into and what they are going to be like in it. Having an uncle who is likely a 2e Aspie is kind of eye-opening that way. My uncle is inexplicable in many ways, so the familial label for him is "jerk."

[kbutton]

8Fill, thanks for sharing more of your story. I feel like we missed a lot by getting a diagnosis at 9. I can't imagine how hard it was to work through all of this waiting even longer.

[8filltheheart]

Cricket, maybe one day in the future mental health care will reach the point where all people, children and adults alike, are able to receive the appropriate interventions to help them lead lives that are considered "normal"--full employment, family, etc. But we are most definitely have not. Our case is far from being unique. Nor is it a story. We are surrounded by adult Aspies whose lives are very, very similar. Our neighbor has a 42 yos who is on the spectrum who has just moved in with them after being incarcerated. (He was lucky bc he had parents who fought for him. He was used by other employees where he worked to be the patsy for their drug trade. He was not fully cognizant of what he was doing. They were able to get the judge to move him to a group work home instead of a prison.) Many Goodwill employees are autistic.

 

When our ds was in high school, a therapist told me it wouldn't matter how educated he was if he couldn't hold a job. Of all the things we heard during yrs of therapy, that sentence is the only one that ended up mattering.

 

I hope your children find a TG path. But if they don't, what does that mean?

[Guest]

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Edited February 10, 2016 by Guest

[8filltheheart]

8Fiil, what have you and your DH done as a couple to maintain your relationship with one another?  Did your DH ever struggle with your son's differences early on?

 

  

My dh is an incredible man. Maybe the death of our dd, which almost tore us apart, really did make us stronger. We learned to rely on faith to survive. We have always kept our marriage in this perspective: God first, our marriage second, our children third. If we can't keep our marriage a priority over our children, then the children ultimately suffer bc we would not be together to support them. That means somehow we have to find a path together for our kids. Fwiw, we both struggle with our ds. He is not easy to live with. When one of us is going overboard, thankfully the other one has been there to pull the other back onboard.

 

We have also spent a lot of time on our knees.

 

8Fills, I really don't mean to pry, but is he on medications?  For the impulsivity and for mood stabilizing or both?  And is he currently receiving psychiatric counseling or mindfulness or group sessions?  I assume you have some compliance issues. 

.

He is not on any meds. After his last drug trial where he curled up in a fetal position and carved 666 in his arm, he has refused to try any more. He has been through numerous drug trials and none that he would stay on.

 

Finding support for adult Aspies is not the same as finding them for children. Adult groups are rare. And, no, he is currently not under any psy care. He has a good rapport with a local dr, but he doesn't believe continuing counseling will help him.

 

Fwiw, we had a difficult time finding resources until he became an adult. In our last state adult services were limited. In this state, however, the DRS is awesome and have offered our ds a lot. They paid for a complete neuropsy evaluation, searched for job placement, paid for a job coach, and have offered special disability driver's training. (Our ds refuses to learn to drive, though.) These types of services are not offered everywhere. It really is location dependent.

[8filltheheart]

Here is a recent study on adult Aspies that might be of interest to some.

 

http://drexel.edu/~/media/Files/autismInstitute/LCO/NAIR/Natl%20Autism%20Indicators%20Report%20-%20July%202015.ashx?la=en

 

Here are just a few statistics:

 

*Nearly one-quarter to one-third were currently taking stimulants, anti-depressants, and/or anti-anxiety or mood stabilizing medications

*Over half of parents reported that youth ages 15-17 years had Attention Deficit Disorder or Attention Deficit

Hyperactivity Disorder (ADD/ADHD) and/or anxiety problems that co-occurred with the youth’s autism diagnosis. Nearly 13% reported that the youth had a seizure disorder. It was possible for parents to report more than one co-occurring condition. Over 60% of youth had at least two conditions in addition to autism.

 

*One in five young adults on the autism spectrum ever lived independently (away from parents without supervision) between high school and their early 20s.

• Most (87%) of those with autism lived with their parents at some point between high school and their early 20s - a far higher percentage than in the general population of young adults.

 

*58% of young adults on the autism spectrum worked for pay outside the home between high school and their early 20s - a rate far lower than young adults with other types of disabilities.

• Four in every 10 young adults with autism never worked for pay between high school and their early 20s.

• those who worked tended to work part-time in low- wage jobs.

 

But this study is limited bc "Our knowledge base virtually ends at the age of 25."

 

This is related to the anger issue bc teens and young adults have adulthood expectations cascading around them. Anger is a spontaneous, impulsive response to triggers.