The Most Stressful Thing Is...

The most stressful thing with dealing with my son with Autism is, he doesn't sleep. Does anybody else have this problem?

Hi bola, and welcome to IAN.

Just to let you know, we have heard here at IAN from many parents who are having a terrible time because of issues surrounding sleep and their child with autism. You are definitely not alone in this.

In one of our IAN online questionnaires, parents were asked about the consequences of a child's unusual sleep patterns (such as refusal to sleep, waking in the middle of the night, and prolonged bedtime rituals), 48% reported that exhaustion due to such issues had a moderate or great deal of negative impact.

To read the IAN Research Report where we talk about this, see: http://www.iancommunity.org/cs/ian_research_reports/ian_research_report_april_2009

I think that the most stressful thing is dealing with the behavioral issues. My son's rages are severe. We do get judged when we are out in public. People don't understand how he can be fine one minute and flipping out the next. He talks- so right away people assume he's fine and just a "brat." I also have a daughter with ASD, but she gets much less help from me because I'm always having to deal with her brother. I know that there is more that could be done to help him, but financially it isn't obtainable for us... That is a very hard thing to think about..

Hi Jmomof2, and welcome to IAN.

I am so sorry to hear about your son's rages, and that your daughter may not get as much attention because dealing with them is so all consuming. I think as you read back on this thread, you will see that this is a very common issue for parents of children on the spectrum. We also wrote about this in our Challenging Behaviors section. See "Mood Instability and Meltdowns": http://www.iancommunity.org/cs/challenging_behavior/mood_instability_and_meltdown

These are tough issues, because the cause can be multiple. Some possible contributing factors are sensory overload, anxiety, mood problems (from depressed to manic-like out of control high energy), behavioral reinforcement (like he's learned to avoid things, or get things, by the behavior, however it started). Often, you may need help figuring out the whole puzzle. What is driving the behavior, and how can you help to lessen it? Is the classroom situation stressful for him, and is any kind of change possible? (I have heard often that a child who was having frequent explosions did much better once moved to a smaller class with less academic and social and sensory demands.) Is his routine too disrupted? Are there sensory issues that are playing a part? A therapist or other professional expert in ASD may be able to help decide what is going on. Sometimes, the school team may have some insight, too.

If the meltdowns become such a problem that no other intervention can make an impact until they are better, medication may become an option. We have an article on this, called "Red Flags: When to take your child to a psychiatrist": http://www.iancommunity.org/cs/therapies_treatments/child_psychiatry_and_autism

The only two FDA-approved medications for treating autism, Risperdal and Abilify, are directed at "irritability" (a nice way of saying meltdowns). See our report on Medications: http://www.iancommunity.org/cs/ian_treatment_reports/medication

I have a 14 year old son with ASD and He is an amazing person! My stress is that other people don't see it or give him a chance. He is blossoming and trying out new things, like trying to make new friends but the children he tries to befriend often times end up ignoring him and walking away from him. It breaks my heart to see this happen to him time and time again and I don't know how to help him or what to say to him other than they don't know what they are missing.

Hi Austinsmom14, and welcome to IAN.

I think you will find so many parents report this experience, especially if they have a high functioning child who is trying to reach out to peers. It is so difficult, as even very bright children and teens with ASD generally lag behind peers in their social understanding.

Sometimes it is helpful to get the child involved in a group of other children on the spectrum. In some areas, there are support groups they can attend, or social skills groups which tend to function as support groups in addition to teaching social skills. I have heard from several teenagers with ASD that friendships formed with others on the spectrum had a very big impact, alleviating loneliness and helping them feel understood. At a recent Autism Society of America event, there was a teen panel during which several teens talked about their friendships with each other, and how important these were to them.

To locate support or social skills groups in your area, you might contact the Autism Speaks' Autism Response Team (888-288-4762) or your local chapter of the Autism Society of America: http://www.autism-society.org/site/PageServer?pagename=community_chapters

Hello - I am new to this community and realise that I am different because I am a sibling rather than a parent or teacher. The most stressful things are:

Unpredictable behavior - everything seems to be going well and then suddenly we're being abused loudly.
Possessiveness: My sister is extremely possessive about me and gets irritated if I interact with my husband or kids. I ignore her at that time of course because I cannot reinforce her behavior by running away from the others and going back to her ...but that doesn't stop the fussing.
Having to do this on my own - which probably also accounts for the possessiveness. No one else steps in - either to spend time with her at home or take her out so she does end up seeing only me through the first half of the day. That's probably why having to share me in the evening is hard for her.

But she's an amazing person - lots of positives and only some negatives- just like the rest of us

Hi mysisterskeeper, and welcome to IAN Community. I am sure there are many adult siblings who have a great deal of insight with regard to their affected brother or sister, and who play a large role in their lives into adulthood. I was wondering if you are your sister's guardian, and how the family came to decide who would care for your sister. Your post brings home the impact this must have on the entire household, and how much support people (adult siblings, spouses, and their kids) may need as they care for an adult with ASD.

By the way, I thought you might be interested in our article on adult siblings and how they often come to care for their sib with ASD. Your "id" brought it to mind, because it's called "My Brother's (Sister's) Keeper": http://www.iancommunity.org/cs/articles/adult_siblings

Hi Connie, I am her primary care giver because a) our mother passed away when we were very young - my sister with Autism is the youngest of four and I am the eldest and b) beccause my family has had the luxury of a living situation where we can have her live with us : and we consider ourselves lucky to be able to do so. I am also a special educator which makes it a little easier.
Have just left my job of 9 years heading the Special Needs Dept in an international school, to start an assisted living center for adult women with Autism. Yes we live daily with the dreaded question: What after us? India - where we live, is in great need of such facilities for the differently abled.
Have written an essay for an anthology titled
" Siblings with Autism " - and that should be published in the near future. Am happy to be part of this forum - I have been looking for opportunities to interact with others who will understand and this is great. Thank you IAN!

It sounds like your sister is very lucky to have you, with all your special skills and understanding. Let us know when your essay is published - I would love to read it.

Hi there!!! new to this board....I have an almost 11 year old with a dual DX or Autism, and Isodicentric 15...so life isn't always fun, lol!!!

I'd have to say the most stressful for us is the screaming/verbal stimming...it's constant...and in social settings, the looks from strangers are so very unwanted, and unneeded. So are the comments about our son sounding like a dog, and being told "I was about to call the police because I figured someone was in trouble" (it has happened) I, and my husband both have issues with the stimming, and my husband will simply not come home after work until Sam is in bed to avoid it...this is fine with me, as I know how hard he works to allow us to live the way we want to. I have PCA's and if Sam gets to be to much, I just leave...he is alot of the time, much better for the PCA's than he is for me. I would like to know, if at any point this will calm down...like as a teen maybe???

Hi SarahRose, and welcome to IAN.

I think you can see from some of the comments in this forum that "unwanted looks from strangers" are something many families feel are very hard to take. The more obvious the stimming or the meltdown, and the more public, the tougher the situation for the mom, dad, or grandparent trying to manage.

Your situation sounds very challenging, and I am so glad that you have a PCA so that you can get a break when you need it. I hope very much that the situation will improve with time - many children do make improvements as they grow and mature, but it is hard to predict who will improve, or when. We also don't know how much of these improvements come from interventions, or from increasing maturity. It may be possible that children with certain types of autism have a different likely trajectory, but we haven't really got a handle even on distinct subtypes of autism yet. I saw recently that the National Institute of Mental Health is doing a study on people whose autism "significantly improved," likely to try to answer some of these very questions.

For our readers who might not know what isodicentric 15 is, it is a genetic condition that often involves autistic symptoms: http://en.wikipedia.org/wiki/Isodicentric_15

I would like to know, if at any point this will calm down...like as a teen maybe???

Hi Sarah Rose: I have to say that I empathise with your situation. My youngest sister is similar and I know times when my husband and kids and even I have expressed so much frustration at her shouting and abusing us that we don't feel like coming home! I can't say that any strategy we have used has been helpful on its own - but things have got better. I will tell you the combination we have used: Medication to address sensory issues, anxiety, depression, aggression + Using a visual schedule to make her day and life more predictable has REALLY helped. She's busy pretty much the whole day and that gives her less time for obsessive behaviors. Also, developing leisure time activities based on her interests gives her something to do in her free time. I purposely keep the stuff that she can do on her own ( listening to a Cliff Richard Album, Embroidery, cooking her rice and bathing) for the evenings when my husband and kids come back after a tiring day at school or work. It isn't perfect and will never be - but boy is it better compared to how things were. I realise each person with Autism is different( If you have seen one person with ASD - you have seen one person with ASD

but its about finding the combination that works best for you. All the best!

My 8 yr old son has severe behavioral issues. He had been on Focalin but that has not helped much, then he taking risperdol but theyre going to up it and seeif that helps. but for school its too late. he will now receive home school for the time being. Meanwhile at his weekly appointment at Kennedy Krieger and they too have seen his behaviors. As of now, he is waiting for the impatient hospital at KKI NBU. I sure hope they can help his behavioral issues because it is causing me stress to the point of missing work

Hi MB1977. I just wanted to say my thoughts are with you. I also wanted to offer some words of encouragement. My son with ASD had terrible behavior issues when he was elementary school age, but medication (Risperdal at one point, Abilify at another) and a therapeutic school turned him around completely. Now he's a teenager, attending a regular public high school (with support from a team there that know ASD), and has learned to self-regulate. No more meltdowns! He was on the meds for several years, but is not on them anymore.

I just wanted to let you know: it can get better. It really can. These years you're in now are hard, but interventions DO help. Good luck to you!