Autism and Anxiety

[brergnat]

Hello all. I am in need of some advice/feedback from anyone with a child with ASD who suffers from Anxiety, or, if you're an adult with this condition, any feedback would be GREATLY appreciated!

I have a son who will turn 5 on Monday. He was diagnosed with HFA at 29 months of age (although, in our opinion, he was "born with autism"...he always had symptoms).

Anyway, he has always been a very happy baby and toddler as well as preschooler. He is very intelligent, easy going, and generally seems to love life and learning about new things. He is very silly and loves to make up funny things and laugh about stuff.

However, in the past few months, he has changed. He has become extremely anxious about, seemingly, everything. He has periods where he is totally withdrawn and just wants to watch t.v. (same shows over and over, and then he perseverates on re-enacting the script from them). He needs to constantly know what is going to happen, and the order in which it will occur. IF that order gets disrupted, he flips out. This is not really new, as he has always needed somewhat of a strict schedule in order to function, but it is literally down to STEPS that need to be adhered to (like, step 1, step 2, step 3, etc.) and if somewhere along the chain, something happens and the steps don't happen the way he expected them to, he can't handle it. This happens with EVERYTHING in his life. He has to break it down into steps. He is also insistent that HE goes first, ALL the time (he has a little brother). If he doesn't get to go "first" with whatever, he LOSES it. Of course, we try not to always let him go first, to be realistic, but it's like he can't handle it if he doesn't go first.

It has gotten to the point where he never wants to leave the house. He used to love going to school, Disneyland, the mall, park, etc. NOW, whenever I mention Disneyland, he cries and freaks out. I can convince him to go (we have AP's and his little brother likes to go), but we have to make a "plan" before we go, of which rides HE wants to go on, and what order, and then we have to follow it, and once we're done, he announces that he wants to go home, and NO amount of convincing him can keep him there one second longer. He announces which parks HE wants to go to, and I cannot talk him into another one once he has made his decision. When I have to go to the store, I have to sort of convince him that HE is the one who decided to go there, and even then, he'll say "what's first...what's next...etc.". It's like he can't deal with the unknown, and he really gets anxious unless he has a really firm idea of what EXACTLY is going to happen. He was never this way before.

The other thing is, in lieu of this new development, we have tried to discuss plans with him in ADVANCE (like if we are going somewhere for the day or some place new), we have tried talking about it a few days in advance, showing him pictures, etc. like I have read helps a lot of autistic kids. He wants to have NONE of that. As soon as I mention something that is going to happen in the future, he FLIPS! He starts yelling "I want to stop it!" (as in: "I want YOU to stop talking about that"--he has a problem with pronoun reversal) It's like, if we try to prep him in advance, it's even worse for him, as I think he gets even MORE anxious as he has more time to think about "the unknown" and he freaks out in his mind.

Recently, he graduated from his Special Ed. Preschool program, which he had been attending for 2 years. He LOVED it there, and had the same teacher for 2 years. He was very comfortable there and was always happy and loved going off to school every day.

He just stared (last week) summer school for the transition to Kindergarten next year. The summer school is at a different location, and with a new teacher (who will, coincidentally, be his Kindergarten teacher in the fall). When I spoke to the teacher this morning to see how he has been doing the past week, she confirmed that he is acting a little "off" and "withdrawn and distracted". Although, she admitted that she didn't really know him yet, she could tell that he was having a hard time. This made me sad, and although I knew to expect to hear that, I just hoped I would have heard "he's doing great!", like I've always heard about him at school.

I am wondering, is this a common phase for ASD kids to go through? My son tends to "go through phases" and I am wondering if this is just that, or if this anxiety is going to be a permanent thing, and this is the age where it tends to rear its ugly head? Part of me thinks that it's just that as he gets older and more aware, he is having new fears and it's manifesting as this...since he has a hard time expressing his feelings he is just withdrawing and going back to what comforts him (t.v. shows where he can sort of go into that world and then "become" that character to act out in life). Currently, he IS Special Agent Oso.

For those of you with kids who have this issue, is there any advice you can give me? Should I seek any medical advice/treatment? I'm not sure the best way to help him right now. I've never had to deal with this before, either in my own life or with anyone I've known.

 

[bookwormde]

Welcome,

Yes Autism is a genetic variation so it exists from birth.

While clinicians often use the term symptoms since they are trained in the disease model it is actually more useful to use the description or characteristics (both beneficial and challenging) and manifestations.

It is very common at the age of 5 or 6 for our children to need to develop “defenses” from the challenges that societal expectations place on them at this age. He is beginning to try to replicate by intellectual means the innate societal social and TOM skills that neurotypical children have. This requires a lot of cognitive “horsepower” so the amount of “down time (in his own world) needs to increase. This combined with any sensory sensitivities that he has generates anxiety, which depending on how well ”understood”, accommodated for and how effectively social, TOM and EF skills are being taught (or not taught) can rapidly reach clinically damaging levels and generate some very damaging comorbidities.

The good news is that for the majority of our children, if there sensory needs are met, they are allowed to “be themselves” instead of trying to turn them into neurotypicals and a good skills based teaching system is in place the anxiety diminished to very manageable levels.

One thing not well understood in general is that with our children’s non-linear, visual processing “wiring” that TV, video and computers are the natural way for “input” and that they remember and manipulate it in ways that most people only get a small hint at with typical innate abilities. Watching the same thing over an over is actually very relaxing (even if with their theatrics it does not appear that way) for them and I equate it to a metal “massage”. If you watch the theatrics closely you will notice minute changes in the “presentation” even if it is only a small change in facial expression. This is the beginning of learning to manage the “power” of a visual mind in very small steps.

Now when he is expected to deal with the world in its typical linear form that is a great challenge since often it is very difficult to take in information in a linear form, partially due to the fact that we do not “discriminate” or categorize at initial input. With the challenges with managing linear input and processing, interruptions pretty much end the process and depending on how he is supported at that point can cause anxiety and the associates maladaptive manifestations such a meltdown end even more damaging behaviors.

The not wanting to venture out into complex social situations and potentially extremely uncomfortable sensory situations it not surprising if these have not been well understood in the past and accommodated for.

The methodologies you mention are very effective, but not when anxiety level are already high since you are just “piling on”.

It is not unusual that he had no problem in a preschool environment, since the really good ones are very much like a family environment.

Focusing on lowering anxiety at this point is a must. A full sensory audit is a must to mediate any items, which are causing him discomfort. As much as practical people around him need to be well versed in HFA/Aserpgers and not push or expect him to be neurotypcial. Then as anxiety start to lowers an effective skills based program (home and school) to help him learn “from the beginning” social skills, TOM and some of the more basic life skills, which he may be having difficulty with.

While it is important for him to master linear input (speech and reading) remember that this is a lot of “work” so he needs massive amount of visual input to learn and visual supports of the linear items. If he has not already had one a good auditory processing evaluation will give you some more “details” to help you with his specific needs).

I assume that he has a full IEP in place (typically with a 1 on 1 paraprofessional) and has had all the evaluations that go along with that. As long as it meets all his needs (some of which likely are ones I outlined about) and a teacher who is educated and keeps current in autism spectrum he will do well in school.

It is also very important that you educate yourself about HFA/Aspergers and that you have a clinical group which specializes in Autism and has the most current training and knowledge in HFA/Aserpergers. Remember that most of what was published more that 3 years ago is grossly out of date with “the state of the art”. I always recommend Tony Attwood’s “The Complete Guide to Aspergers” C/2007 (available on Amazon for about $25) as a first read, so if you have not read that it is a good starting point.

I know the above sounds like a lot of information, but it is only a few cursory descriptions of some of the more core areas.

Just so you have a frame of reference for the above, I am an apsie from a long line of aspie inventors, engineers, mathematicians etc. and have a DS 10 who is Aspergers.

If you have any specific questions please feel free to ask, as there are many posters who are experienced in your situation.

bookwormde

 

[brergnat]

Bookwormde:

Thank you SO much for your reply. I was sort of hoping an adult on the spectrum would reply, because I find that sort of input so useful! Your information makes a lot of sense, and I would have never thought of it that way, so I appreciate your response.

Just to address a few points, yes we do have an IEP in place, have for the past 3 years. He has had full evaluations done, both by neuros and by the school system. We are fortunate to live in a district that is one of the best in the state for special education, particularly Autsim. We were extremely pleased with his preschool program and his K placement is looking really good too (he'll be in an all day special day class, ratio of 12 students to 3 teachers). He JUST had a full sensory evaluation done at the preschool, and it didn't uncover anything that would require any special accommodations. We don't think he has any sort of auditory or visual sensory issues, since he's never seemed uncomfortable in those ways (and he has the ability to verbalize if he did, and he hasn't). He mainly stims with his hands, and always has them moving, doing something. And, he just needs a lot of vestibular input (he's always moving/fidgety, etc.) but those accommodations have been written into his IEP.

He can already read (full on, and comprehend). He taught himself, and has been reading since 3.5 years old. And he can do math up to about 2nd grade level. He's VERY into reading and math...that's his forte. He totally excels there. He'd rather do math flash cards than play a board game or color with crayons. So, I don't worry about academics with him at school. That is something that will not challenge him (yet). His IEP goals focus on social skills, totally, as well as focusing and staying on task independently during classroom work.

He's not Aspergers...he *technically* had a speech delay, so he doesn't fall under that classification, but putting that aside, he is an Aspie all the way...

And, I got a little note from the teacher in his backpack today that he did "great" today. The teacher mentioned that he worked really hard for positive reinforcement and that he wants to please the teachers, so that is good. She promised that it would get better with time. So, I at least feel reassured that the TEACHER is going to be looking out for him and that when I send him to K in the fall, I don't have to worry so much about the transition.

 

[bookwormde]

I am glad he has good clinicians and school program. The hand stimming is usually a combination of sensory needs and anxiety release, my DS’s OT had us use theraputty which both strengthened his grip and met the same need without being so distracting so you might ask his OT about that. My Ds has found reading “challenging” but is on grade level, but math he is above and his analytical skills are well past most adults already. It is a process with setbacks and great progress and wonderful moments and with as smart as you DS is it is extra challenging at this age since this greatly increases the differential between his intellectual capabilities and his social competence which add to frustration and the associated anxiety.

Understanding his different EF system (for you teachers and him) and the gift it is, is very important so working on that is a good place to go when other thing are “under control”

You have lots of challenges ahead but with his gifts there are also lots of wonderful moments when you will really see how he has the potential to make major contribution to the world through his abilities, special nature and insight.

bookwormde

 

[elzamom]

Unfortunately for us my daughter started with severe anxiety in pre-school. She is in the 8th grade now and it is still a major problem. She is very limited by it and it is so sad to see her in so much pain. She missed 70+ days of school 7th grade and 6th grade only made it through the beginning of December.
She gets so many panic attacks she doesn't make plans with her friends and even struggles going to grandmas house. By the way she is in therapy, goes to social skills group, takes 4 kinds of meds, and has had in home behavior aids and specialists over the years.
I hope your son doesn't have as hard time as she did.

I stay very calm, I stay in the present and I always love her. I am also very very flexible, unfortunately though we are in major financial troubles due to I can't work because of the care she needs. I get calls from her school needing me to pick her up at least 2 times a week. Plus we spent this year alone $30,000 trying to get her help.

We are going to disney next week and we will be getting her a Disney disability card. She suffers so much, at first she was like no way but the other day she said mom my anxiety been really bad lately i think we should get the disney disability card. I am so proud of her for learning self advocacy.

I will post about how the card helps her when we return.

 

[elzamom]

Her school is very flexible with her. She can leave her classes at anytime and go to the academic support room to work independently. She only has 4 classes, math, English, social studies and science. No art, gym ,music, foreign language. She doesn't go to special ed classes because the students their are not appropriate for her. It is hard to find her appropriate peers in a public school, meaning girls who have aspergers, who are extremely intelligent with severe anxiety, who are able to hide most of their differences so appear to be typical to others, unless she is having a panic attack of course. People have called 911 before because they thought she was dying!

 

[JulieWent]

Elzamom!

Wish we could introduce your daughter to my son. He is going into 9th grade this year and sounds very similar in character. He's coping better, and hasn't had the out-of-school needs, but inside, I think he feels a lot like your daughter. He's been in therapy and on meds since he was in, what, 4th grade?

But the reason I responded was that something really wonderful happened this past year, and your post made me think of it. You said your daughter was only in core classes -- more art, music, etc. DS enrolled in school choir this year. (He doesn't have a particularly good voice, but he loves music.) The choir teacher was great with him, and the other students treated him like one of the gang. He traveled with them. (I went along.) He competed with them. (Boy was that gut wrenching -- but they placed 3rd in one competition and grand champion in another!) And he felt like he was a part of something bigger than himself.

If you have an electives teacher at your daughter's school who is talented and good with all kinds of kids, it might be worthwhile to consider getting her into an elective that interests her. Maybe she would find a place???

Good luck. God knows I have an idea of what you're going through.

Julie

 

[bookwormde]

Elzamom,

The critical part that anxiety plays in the health of our children is one of the first things I talk about when “briefing” families who are just beginning the diagnostic process. When situations exist like with your daughter, where it is exceptionally hard to mange it makes everything else 100 times more difficult and progress slows even for the brightest of out children.

I am just wondering how her paraprofessional is, my sons 1 on 1 para has made all the difference for him. She was not overly experience or trained in aspergers initially, but was flexible and caring and willing to do everything to learn. She is becoming a real “pro” does so much in monitoring and managing his anxiety (that teachers and other staff just can not do) that his progress is astounding.

bookwormde