Help and Suggestions - DD diagnosed GAD. Any chance of ASD or other thoughts?

[andromedajulie]

I would appreciate any thoughts on this. Please be kind. I feel like a horrid parent and don't know what to do anymore.

DD1 is 9 1/2 and has always been difficult. For so many years I just thought she was tough, then I thought she had coping problems because of divorce, then I thought she was just difficult again. She has been in therapy for 3 years but mostly refuses to talk about anything serious. Over the past 6 months things have gotten worse and worse to where she is getting impossible to live with. I finally took her to get a psych evaluation because of what I felt was extreme anxiety and OCD symptoms.

She was diagnosed with GAD, which does feel right to me as she is definitely suffering greatly from anxiety. Because of the intensity of the situation and her history of being resistant to talking and other techniques, we decided to try meds prior to starting CBT. Five days ago we started Prozac; I am going to call the dr. with some feelings she has expressed of wanting to be violent.

There are lots of strange and disturbing behaviors, however, that I'm not sure are explained by anxiety. I have started wondering if there is any chance she is on the autism spectrum. I don't really know much about asd so I'm not sure where I'm getting this thought.

Some of the behaviors that cause me to wonder:

Her father (divorced) has Aspergers, but I have never thought she had this because she is very empathetic, to the point of being hypersensitive to the facial expressions of others, sometimes gets teased for not being able to take things lightly or as jokes, and for not "getting" things. On the other hand, she has always been highly verbal and I think gifted in some of her higher thinking.

She is very literal and has trouble with figurative language.

She is weird about wanting verbal accuracy and constantly corrects my little verbal errors especially when they are not part of the main point of the sentence (like I mispronounce a word and she stops the story to correct it even though everyone else knows what it is from context). 

obsessive interest in specific items or information, logistics, knowing the schedule and gets stressed out when things are changed

has a lot of OCD type symptoms like having things match up number wise, having items lined up

worrying about doing things wrong or breaking rules that are not real rules or are only guidelines, like arriving early, or going out the in door.

weirdly attached/obsessed with both me and her 20 mo old sister, constantly invasive of personal space

extreme reactions to physical discomfort, constantly is hurt, like everything that touches her seems to cause pain and she screams like an arm is getting cut off.

when extremely stressed out, repetitive yelling and/or headbanging/headshaking, extreme temper tantrums, throwing her body around 

some of these are probably related to her anxiety (another matter I am not going to describe, but it's excessive) but I am not sure all of these are. These things are making me CRAZY. Like I do not want to be around my child anymore. It has been going on for a long time and getting more and more extreme. I feel angry with her most of the time. I keep trying to be more compassionate but these crazy meltdowns and screaming over stuff that is just nothing are making me want to run away. I only recently wondered if I might find some help on the special needs board. Everyone else outside our family thinks she is normal and has looked at me strangely when I talk about these problems. Only DH is with me on how unbearable this is. She is suffering so much inside, that is why I went for the psych evaluation. I just would appreciate any suggestions or help as I have been failing to be a good parent and I am just desperate.

[FarmerBeth]

Nobody here could know for sure what's up because we aren't there.  That being said, I don't think you should feel crazy or silly, you have really valid concerns about your daughter and her behaviors are similar to some ASD kids (my own definitely included).  Our son started out with an anxiety/tic disorder/OCD/NVLD mash-up diagnoses that persisted until this last year when he was re-evaluated.  He definitely has similar behaviors.  That being said, all kids are different, and there is a very fine line between different diagnoses, especially the line between OCD related to anxiety compared to that caused by either ASD or Tourette's.  We were years getting it figured out, and even this year, the professional involved had a hard time reaching agreement.  I suggest you see a developmental pediatrician or a neuropediatrician to help you get a full evaluation and perhaps suggest any other evaluations from other professionals that may cast light.  If these behaviors are making you feel this way, then you do need more help.  The people on the outside are just that- on the outside.

Also, really, I don't think you should be beating yourself up so much.  Make sure you are getting a break somehow (favorite activities, girl's night out, whatever).  It is really hard to coach your child to better deal with anxiety when you are overwhelmed.

[Jen Muise]

(hugs) for starters!  You're not a bad mom, bad moms don't know their kids like you clearly do!  You could be describing my dd, except for the last few things - she tends to be a run to the bedroom crying kind of kid rather than a violent outburst kid.  And, I've gotten mostly a similar reaction from others too - generally, even teachers and people she's around a lot don't see the issue.  We just got a diagnosis of auditory dyslexia, and probably CAPD so we're working on testing for that (check my other threads if you're interested).  There are a ton of things that look kind of like autism/aspergers that can be explained by other things, often learning differences like Nonverbal learning disorder, or Auditory processing disorder.  The psyche eval should have shown autism as a possibility if they had thought she was on the spectrum so you're probably ok there.  Keep digging, tho!  This stuff is just hard, lots of times the experts don't know what's going on so don't feel bad if you don't either. 

[beachbaby]

Just wanted to offer a and let you know that I've been there, too. My DD has a dx of PDD-NOS or Aspergers (depending on which clinician you ask) and OCD and anxiety. I think it's really hard to tease out what's going on with complex kids like ours, even for the professionals. In our case, my DD presents really very differently depending on the environment she's in, which adds to the difficulty.

I will say that a lot of my DD's oppositional behavior, tantrums, etc. decreased when her anxiety/obsessive thoughts did. And that compulsions and obsessive thoughts were driving a lot more of the behavior than we realized. We've been using the supplement inositol and have seen a huge improvement in her anxiety levels, 'just right' behavior and overall mood. I would research and check with your dr. about starting it, though, especially in addition to meds.

[andromedajulie]

Thank you for the support and for these ideas. It sounds like I need to just wait and see what happens. It is hard because I feel like I have been in denial for 2-3 years and now that I am getting help, I am fixated on getting it exactly right (so she can get better!!) and it sounds like that is not how it works. I guess many of you struggle with the right diagnosis and even if there is more than one I need to get a handle on one and see how the other manifests (or not) and THEN if it's not working move on to another professional. 

It is hard to be patient. I think that starting to feel like I don't want to mother my child is one of the most horrible, guilty feelings of loss and failure I have ever felt. I will try to be more compassionate with myself and I will try to work patiently on one thing at a time! Thank you for all the thoughts.

[nayma]

Hi.  Only have a second, but I'd recommend "Mislabeled Child"- it does a nice job teasing out all the differences between diagnoses.  You can probably find it at your local library.  Good luck.  You certainly don't sound like a horrible parent, and many things in your post sound like my experience with parenting my dd - (5) with asperger's.

[andromedajulie]

thank you, Nayma!

[orlakelly]

Hi so sorry for everything you are going through. Where are you at re paed or doctors? You really have so much information to bring before a doctor or specialist to warrant further investigation. I wouldn't let things lie any longer and your child is really suffering and knows something is wrong but does not know how to deal with it. Even if she gets a diagnosis at least you will know what exactly to do to help her.

[PikkuMyy]

I'm a therapist - most of my clients are on the Autism Spectrum but some have ADD, anxiety issues, etc.

Have any professionals ever suggested Asperger's to you before?

That list could describe several of my clients to a T, including the strong empathy. I often hear parents describe scenarios in which a professional has told them that their child can't be on the spectrum because he "Makes eye contact" or "is empathetic" as if it's not possible to do those things and still be on the spectrum.

Based on what you've written, I would look at the autism spectrum more carefully, with an eye to how to help your daughter deal with the items on that list.

YOU ARE NOT A HORRID PARENT. None of those things on the list were caused by you. I see them all the time in my clients, and none of them are because of their parents except in the genetic connection. So don't spend any time feeling guilty or beating yourself up. Instead look at those symptoms as indicative of a general issue, and research how you can help her overcome them interfering with options for the happiest, fullest life.

[mamarhu]

You are a GREAT mama! As others have said, don't beat yourself up.

I totally support following up on any evaluations you can arrange, but in the meantime...

Have you read The Out-of-Synch Child, and its sequel, The Out-of-Synch Child Has Fun?  Ostensibly about Sensory Processing Disorder, these books are less interested in formal diagnoses, and more about addressing symptoms; making life more pleasant for kids and their families. There is so much overlap in the realm of neurological diagnosis - sensory stuff, autism spectrum stuff, symptoms that don't quite fit categories. Another book to look at, that doesn't need a diagnosis to work it, is The Explosive Child. Without any specific diagnosis, it addresses specific lagging skills, and problem-solving approaches.  All these book suggestions are available on Amazon.

I have special needs kids of my own, have been a "therapeutic level" foster parent, and work in the field of special needs kids. In my opinion, diagnoses are not all they are cracked up to be. It can be very useful to understand how a child's perception differs, what coping skills they might need, or how to approach them. In some situations, a diagnosis unlocks the door to needed services. What a diagnosis will NOT give you is a cookie-cutter, one-size-fits-all answer to how to "fix" your child. I don't mean to be a wet blanket, but therapy, medication, diet, and a thousand other approaches have not worked for my family. What has been the best in my experience is to try to define the child's individual needs, then try to find ways to meet those needs.

[Emmeline II]

Originally Posted by andromedajulie 
 I only recently wondered if I might find some help on the special needs board. Everyone else outside our family thinks she is normal and has looked at me strangely when I talk about these problems. Only DH is with me on how unbearable this is. She is suffering so much inside, that is why I went for the psych evaluation. I just would appreciate any suggestions or help as I have been failing to be a good parent and I am just desperate.

I highly recommend a multidisciplinary evaluation at a hospital clinic like this.

A lot of that behavior describes my ds by 5/6yo. He was first diagnosed by a psychiatrist with ADHD w/disturbance of emotion and conduct, but we also had an evaluation at a children's hospital similar to the one linked above. Though the hospital confirmed the ADHD diagnosis they felt he was on the borderline for Asperger's (his social deficits put him furthest in that category); he also has SPD, some anxiety, and a receptive language disorder. He is currently in speech therapy at school for social reciprocity and pragmatics and I want to put him in a social skills group for the summer. ADHD medication did offer improvement right away; the really dramatic tantrums (where I had restrain him) stopped, and the lesser ones gradually diminished. Once we found the right medication (second med, second dose) there has been steady improvement in his behavior. His teachers the past two years understand him pretty well and can usually head-off any anxiety "freezes" and melt-downs. His teacher understands how to work with ds' literal mindedness and how to compensate for his weakness in learning thing verbally by offering more visual aids (which helps prevent anxiety and meltdowns).

I'm not saying this is necessarily what is going on with your dd, similar symptoms can have different causes, just that I've been there and it got better. For me, being understood and having help (ds' psychiatrist, behavior therapist, and teacher) gradually lessened the feeling that directly caused the behavior--every time one of them motioned how difficult this must have been for me I darn near cried .

[andromedajulie]

I just read the chapter on Sensory Processing Disorder in "The Mislabeled Child" and just about fell off the couch it sounded so much like DD. Not in all categories, but in several. I could not believe it.

How do I get this evaluated? We go to psychiatrist for checkup on Friday to see how she's doing on the anxiety meds. (I still feel the GAD is correct - though it may be related or a result of) Does a psychiatrist evaluate her? Should I ask for a referral - who evaluates for SPD? Should I give it more time with the anxiety concept alone or how hard do I press? When do I know if I should go somewhere else (ie/CHOP - Emmeline we are in the area, I had just been wondering if I should be taking her there!)?

Thanks mamas.

Also - I don't hate myself for causing it - but for how angry I still get with her over the crazy stuff going on. I feel that I should be feeling more compassion and showing more patience. The other night I was pretty sure the neighbors were going to call the police (that's how bad the meltdown was) and frankly I was fantasizing about it :(

I will check out The out of sync child too.

[Emmeline II]

Quote:

Originally Posted by andromedajulie 

How do I get this evaluated? We go to psychiatrist for checkup on Friday to see how she's doing on the anxiety meds. (I still feel the GAD is correct - though it may be related or a result of) Does a psychiatrist evaluate her? Should I ask for a referral - who evaluates for SPD? Should I give it more time with the anxiety concept alone or how hard do I press? When do I know if I should go somewhere else (ie/CHOP - Emmeline we are in the area, I had just been wondering if I should be taking her there!)?

Contact the program you are interested in and they will tell you the procedure. Ds needed a referral from our PCP. They will ask what your concerns are; I wouldn't just say SPD, I'd give examples of her behavior, her current diagnosis, that you think she may also have sensory processing issues, and that you want a more thorough evaluation to ensure a problem isn't being overlooked. Technically SPD is not a separate diagnosis, though ds' evaluator did use the term on the results form. I wouldn't wait for a couple reasons, 1) I don't think that "just" a psychiatrist is a thorough evaluation for a child and 2) it can take time to move through the process of referrals, getting the appointment, and waiting for the appointment to happen--it took 9 months from the time I went to my PCP for the referral until the appointment. I didn't doubt ds' ADHD diagnosis--but the ADHD was the duck, and all the other things were the paddling feet.

[Altair]

And don't forget-- many kids with ASDs also have SPD.  I work with kids who are high functioning on the ASD spectrum (teacher) and many things in your list are things I would look at further.  I agree a full multi-disciplinary psycho-ed evaluation is better at this point, especially when medication is involved you want to make sure you're working with the most information possible.  Good luck!