New Here. DD8 Dxd AS now has some Bipolar characteristics

[Mama_to_Grace]

Hello. Just found this forum. I am a single mom to daughter, 8 years old with a diagnosis of AS and Dev Dyspraxia. She was diagnosis'd 2 years ago by Neuro psychiatric. Our Dev pediatrician has frequently brought up the possibility of Bipolar due to my daughter's mood swings, aggression, and violent meltdowns. Lately I have been questioning the AS diagnosis and see more Bipolar characteristics. My daughter has very low frustration tolerance and can have multiple meltdowns daily. She will not calm down and when I put her in her room (which I usually have to do physically by force) she proceeds to pound on the walls, windows and doors all while screaming things like "I hate you" or "I am going to kill you". In the past year and a half she has developed Obsessive Compulsive Disorder (OCD) behaviors that come and go such as tapping drawers, pulling out her eyelashes, flicking her wrists, and she has always counted things. I assumed this was all in the context of the AS. However, I am learning that AS kids do not have the violent behaviors my daughter has-such as purposely hurting others and thinking it's funny, hurting our cat, damaging things on purpose, being willful and defiant. She usually has a flat voice with flat affect but will become manic and speak in a high pitched voice. My mother has mentioned that daughter, at times, seems "not herself" or out of character. She has always had a vivid imagination. She has imaginary friends. She also has periods of disassociating-where she seems distant and will say strange things such as "you are not my mom, where is my real mom?" or talks nonsense. She can also "zone out" and be non-responsive.
I had her in public school and in one short year she lost her ability/desire to read (which she enjoyed very much prior to entering public school), freaked out in assemblies, refused to separate from me each morning, and became very anxious, even after school. The school would not help me in any way. They stated there was nothing wrong that needed their intervention. So I withdrew her from public school and now have her in a private school. While they are not fully addressing her needs, at least she is not as anxious all the time (much smaller class sizes). My daughter does very well academically (with the exception of reading). She does, however, need a lot of assurances from the teacher and mostly refuses to interact with the other children. My daughter does hate school and mornings are horrible with me trying to get her dressed, hair brushed, shoes on (takes forever for them to "feel right"), and fed. She is very lethargic in am. She has separation difficulties that are pretty extreme, she will cling to me, cry, and refuse to let go every morning at school. She has even pushed me down to prevent me from leaving.
She is socially immature, only watches G or PG movies, is frightened easily, has horrific nightmares which make her afraid to fall asleep, and is often afraid to go outside alone or be in a room alone. Sometimes she wants me to accompany her to her own bathroom because she is afraid of "monsters or bears". She frequently cries over things that happened a long time ago, sometimes even YEARS ago such as over my grandmother who passed away in 2006 (when she was 3). Then, things that should make her sad seem to have no impact at all, such as our cat of 13 years died and she simply said "I want a NEW cat". No sadness at all. She sometimes seems to have a photographic memory and has stated while watching a show that she sees something and will tell me where she has seen that exact book/object/item before. Her teachers remark that she notices things in classroom that are new or if they wear a new shirt or earrings. Strange awareness for a child her age.
She makes up songs in her head with complex lyrics and will repeat the song incessantly, sometimes it evolves with different lyrics or patterns. She has sensory issues as well and has seen an Occupational Therapist (OT) for 2 years. She also has articulation and pragmatic speech issues and sees a Speech Language Pathologist (SLP) for that.
I have medicated her with SSRIs on 2 occasions but side effects prevented continuation. I am currently seeking a child psychiatric to help me deal with these issues as they seem to be growing/compounding and not going away with age or behavior interventions.
I look forward to getting to know everyone on this foum.

 

[keista]

Wow! And Welcome!

What you described sounds VERY much like AS WITH other stuff going on. In other words, in my opinion the AS diagnosis is correct, and now other things are manifesting/emerging now that you are addressing AS behavior issues. Most of our kids on this board have more than one diagnosis at a time, and as they get older, the dxes can change or new ones added because new symptoms either start to emerge, or become more clear once original symptoms are addressed.

She also has periods of disassociating - where she seems distant and will say strange things such as "you are not my mom, where is my real mom?" or talks nonsense. She can also "zone out" and be non-responsive.

That does NOT sound like an AS trait. I could be wrong, I only know about 20 ppl with AS and they say "once you know a kid with AS you ONLY know ONE kid with AS" But to me, it sounds like something more? Partial seizures, psychotic episode which could be attributed to various things - bipolar, schitzoaffective disorder, schizophrenia, and possibly other stuff I personally don't know about.

It's a shame you didn't get an IEP through the public school. Sounds like she needed it. I'm not sure if it's a local or national thing, but here, kids with IEPs have the opportunity to go to private schools via a scholarship program. Does your private school have a formal "contract" like an IEP with goals and accommodations for your daughter? If they have such a process, please explore it. It will protect her rights within the school if behavior becomes a BIG issue.

Welcome again.

 

[TeDo]

Welcome Mama. After I read only the first part of your introduction, one thought occurred to me only because we had similar behaviors. My question: Is she on any medications now? The reason I ask is because my son is Autism Spectrum Disorders (ASD) and the psychiatrist put him on Risperdal to help with some of the Autism Spectrum Disorders (ASD) anxiety. Risperdal made my son act the same way you are describing your daughter. He became extremely violent and defiant. Once we stopped the medication, those behaviors literally disappeared. This might not be the case for you but, of course my having been there done that, it was the first thing that popped into my head. SSRI's can also sometimes cause problems for Autism Spectrum Disorders (ASD) kids. It's something to look at and yes, definitely find a child psychiatric before you do anything else.

You have come to the right place for help and support. These parents have heard, seen, and dealt with it all and they all have very broad, strong shoulders to lean on and sometimes even cry on. Stick around. They have kept me sane.
Many {{{{(((HUGS)))}}}} to you and your daughter.

 

[BusynMember]

Sounds like AS to me big time. Maybe something else is also going on too, but she really does sound classicaally AS. Many (not all) AS kids do get violent out of frustration or sometimes fear, like when they have to transition or they are in a place with high stimulation. Does your daughter have an IEP?
I have a serious mood disorder. in my opinion she seems more like an Aspie than like a kid with a mood disorder, although the two can co-exist. Has she ever seen a neuropsychologist? I prefer Neuropsychs to psychiatrists for autistic spectrum disorder as many psychiatrists don't understand Autism Spectrum Disorders (ASD) and misdiagnose it.

Agree it could also be medications.

 

[Mama_to_Grace]

Thanks for your responses. She is not currently medicated. However, I believe The SSRIs we have tried can also "activate" these violent behaviors in some kids. ??? Don't know if that's true? And if it is, well she has been off the last one we tried: Zoloft, for 14 months. The SSRIs DID trigger WAY worse Obsessive Compulsive Disorder (OCD) behaviors. She was pulling out her eyelashes & hair and eating the hair and doing many ritualistic things. She also said that she couldn't stop thinking about "bad things" no matter how hard she tried. Her nightmares were also at their worst and she would regularly have dreams where she died or things crushed her or ate her.

So I am very leery of attempting any medications again although as the meltdowns become really severe and aftwerwards when she says things like "I am stupid" or "I am bad" or "I hate myself" I am starting to think that if I don't find a medication that works soon this could become dangerous.

The public schools here are not good at all (I am in rural Texas) and unless your child is failing academically or is a major disruption in class they don't have the energy or resources to help. My daughter is very anxious and shy in school and tends to latch on to the teacher but is otherwise mute and not disruptive except for crying or holding her ears or not doing her work without prompting, all of which the principal and teacher would tell me could be dealt with "off the record". She had a lot of issues in PE and I finally had to just keep writing notes to the coach to let her sit out and I think the school eventually saw me as an "over-involved" parent that they wished would just butt out. They would always refuse to allow me to volunteer in the classroom or observe and refused her therapist to obsereve, stating it was against the privacy policy. They did however have their "autism specialist" observe and she stated my daughter was doing "fine". They had even taken away my daughter's chewy necklace (she has oral stims) saying it was "unsanitary". Finally, my daughter's therapist said she was so clinically anxious that she should be removed from that school, at least temporarily and that is when I found the private academy. They are Montesori-ish and the director has a daughter with some similar issues as my daughter so she made me feel better that there would be someone looking out for her. However, they have no IEPs or anything in conjunction with our public district at all and most parents of children at this school desire it that way. They LAST thing you want in my area is for the county "officials" in your parental business.

Hope this answers the questions.
Thanks.

 

[keista]

OMG I'm so sorry your school so blatantly lied to you. Yeah, let's keep it off the record, Oh, and you stay out of it too, and now we'll just start taking away all those 'off the record' accommodations we promised you, and HA now you can't do anything because there's not record of her having any problems! GRRRRRRRRRRR Glad the school she's in seems to be a good fit for now.

I don't blame you for being concerned about the SSRI's. Yes, unfortunately, these medications can have the opposite effects that we are looking for. Unfortunately again, there is no way to know which medication is good or bad for any particular person at any given time. medications that don't work in childhood may end up being a saving grace in adulthood. This is the reason you need a good psychiatrist that is willing to asses and really work with you as opposed to just writing a scrip. One of the first we worked with had no interest in doing any "real" work with us. Just kept writing the same scrip and insisted all those "new" behaviors were a new diagnosis of ODD and, no the medications had nothing to do with it. I did not leave him fast enough.

When you go over her symptoms in your head, or telling ppl about them, (tdocs, psychiatrists, us) leave out all those behaviors you think were caused by the SSRI's. Mention that XYZ happened while she was on an SSRI, but leave it out of her overall symptoms. The reality is, those symptoms are symptoms of the medication, and not her real issues.


My DD1 had bad reactions to 2 SSRIs and bad side effects to a third. DD1 also had dissociative type states while she was on Paxil. I was calling them 'creepy episodes' because to me and her brother, it was very obvious it was not really her. Since we stopped the Paxil, no more 'creepy'. And if your 'mom gut' tells you to keep her off SSRI's, stick to your gut and stay strong. DD1 ended up in crisis stabilization while on Abilify. I repeatedly told them I didn't think she should be on SSRIs and why, and guess what they wanted to give her? An SSRI. I refused and told them to stop the Abilify as well since I believed that's what got her there in the first place. Right now she's medication free so I can asses her NATURAL symptoms and start from scratch.

And, just so you know, DD1 is not AS but has similar anxiety and mood swing issues to your G. by the way if that's her real name, you can go back and edit it out of your posts. As we move into the digital age, and as she gets older, that kind of privacy may become more important.

 

[zoo_keeper]

wow. And I thought the school officials in the rural town I lived in were inept! Refusing to allow you to volunteer in your child's public school classroom? Is that that even legal? I'm glad you pulled her out of that school. My bipolar difficult child 1 went through a somewhat similar situation last year, but due to behavior problems. Was suspended constantly and was such a negative enviroment for him it got to the point where his psychiatrist advised homebound education (which the school jumped on). And then as we wanted to start transitioning him back, they had him 'independently' evaluated for an iep and found he wasn't eligible! Completely backwards.
Also, the disassociation episodes and paranoid thinkin sound very much like my difficult child 2 when he had a bad reaction to zoloft.

 

[Marguerite]

Refusing to allow you to volunteer - from my experience, that is a big red flag. At our local school we had two teachers, husband and wife, who would refuse to make any accommodations (while promising to do so). The wife was the powerful one in the relationship and the school. We did have a visiting expert go in to the man's classroom to observe then report; the interview afterwards where she talked to the teacher and me, we had to have in the staffroom and the man's wife was at the other end of the room, ears flapping, I think to make sure her husband was not going to get shafted. Of course there was no possibility of the session being critical; the aim was to make constructive suggestions and to give the teacher resources he may not have had access to previously. And when two years later his wife was difficult child 3's teacher - she did not take this well at all and became very obstructive. At an IEP meeting when I had the speech pathologist also present, the SP said she would come in to observe and support, and the teacher said, "No, you won't."
I insisted and got my way, but it was the last time that teacher ever allowed any therapist to observe. It could have been fought higher up in the system, but no parent ever dared insist, after me. Soon afterwards, therapists in general were banned by the other staff, because this teacher leaned on them all heavily. The principal was a nice guy but a wimp.

Back to your daughter - much of what you describe sounds like AS to me. The violence, the outbursts, the rages - definitely AS. We get that still, but not as badly now he's older. In difficult child 3 it's driven by frustration and anxiety, either singly or together. And we had to learn to see the world as he does, in order to recognise the source of the problem so we could learn to head it off at the pass.

There may be something else, but for now I would focus on the AS and try to see it in that light only. Keep an open mind, however. Mommy instincts can never be discounted.

Marg

 

[Allan-Matlem]

Hi,
I am sorry about the challenges your child is facing. Dr Ross Greene , the creator of the CPS - problem solving approach prefers not to spend too much time on dxs as most of them just describe the kid - looking bad. And that tells us little about why she is behaving in this way .Now kids don't look bad all the time , it is usually under certain conditions that the demands placed on her outstrip the skills she has. Those dxs that do also talk about lacking skills have the down side that people still get caught up with the descriptive aspects.

i suggest you use the ALSUP - assessed lagging skills and unsolved problems list / TSI - the thinking skills inventory depending on the CPS websites http://livesinthebalance.org or http://thinkkids.org

the next step is to take your list of unsolved problems, prioritize them , putting others on the shelf so as too reduce tension and calm the home and start using CPS to teach skills in an indirect fashion.

Mentors, buddy -tutors etc - I would encourage a mentoring or buddy-tutor , older sister friendship - they are good are creating trust and promoting so many life skills.

There is an approach called RDI for the autism spectrum , similar to cps that focuses on ' dynamic skills and intelligence

Mindfulness - medidation - kids who acquire these relaxing, soothing and calming techniques are able to regulate their emotions more effectively

Medication - some kids benefit from medication but the medication merry-go-around can be quite a challenging route to take . maybe as part of a holistic approach your psychiatrist can find something that will help

sleep , eating , sensory issues - we need to check these issues as well

I hope this helps

Allan

 

[susiestar]

diagnosis's can be useful. In many areas they open doors to various types of treatment and support that you just cannot get with-o the diagnosis. Your public school violated about every right your child has as far as equal treatment for the disabled. TX schools have a really BAD record for handling students with disabilities. At least I have yet to hear many parents of kids with problems who didn't face major battles - and many had to go to court and even after WINNING and ahving court orders for various things the schools fought or refused to provide them. It is one reason I flat out refused to move to TX when my husband had a job offer there about 7 yrs ago.

Many kids just cannot handle ssri's for the reasons your daughter cannot. My daughter, who is not autistic, was put on first prozac and then zoloft to help deal with ptsd problems in 3rd grade. They made her higher than a kite and very much out of touch with reality. She is 16 now and they do not create that reacting now.

My son has asperger's and was incredibly violent. Right after his diagnosis, I attended a support group for parents of children with aspergers. Most of us dealt with violence at one point or another, often because anxiety and frustration were so great and the child had no way to handle them. Some of the Aspies persevered on violence or violent images/weapons/etc.... Risperdal was a miracle for us. My son was very very dangerous for a long time and risperdal really helped in a HUGE way.

No medication is right for everyone. Many docs thought my son was bipolar, but he just isn't. IF they think your child is bipolar, PLEASE insist that they follow the medication protocol for treatment of bipolar disorder that is approved by the board that certifies psychiatrists. It drives me nuts but most psychiatrists want to start with ssri's to treat bipolar. Antidepressants, whether ssri or antoher kind, are known to CAUSE mood swings in people with bipolar. PROPER medication protocol is to start with 1 mood stabilizer, add a second if needed, and an atypical antipsychotic like risperdal or seroquel, and once the patient is stable, mood wise, on the right cocktail of these medications (it takes 4-6 weeks at the therapeutic level of mood stabilizers to know if they will stabilize the moods, which seems like an eternitiy when you are in the trenches!), if there are symptoms left medications like ssri's, etc... are added VERY SLOWLY to see if they help.

PLEASE read The Bipolar Child by Papalous if you think your child is possibly bipolar or has a mood disorder. Pay close attention to the medication section and insist that medications follow it. I have asked many psychiatrists why they don't want to use mood stabilizers first and I have NEVER gotten an answer. Most I have gotten is mumbling, usually I am told we will discuss it at the next appointment as our time is up. Then the haven't brought up bipolar as a diagnosis for my child so I never got an answer. I firmly believe, having known several pharmaceutical company reps, that it is largely because the drug co's push ssri's really ahrd as the fix for any/everything. So the docs hear so much about them that they start throwing them at everything. It is the only reason I can come up with that so many psychiatrists (ones i have known and ones other parents here and in real life have spoken about) try to not follow the medication protocol established by their profession and instead want to start with a medication class that so much research has shown will NOT help and will make things worse. (There even used to be a type of bipolar that is caused by ssri medications, though I forget which type it was in the DSM!).

I strongly recommend reading The Bipolar Child by Papalous and The Explosive Child by Ross Greene. Another excellent book is "What your Explosive Child is Trying to Tell You" - I cannot remember the author for the life of me!

 

[susiestar]

Oh - ANY place that will not allow you to see what your child is doing during the day is NOT a good place for kids. Every guideline for picking quality childcare says that you should be able to see what your child is doing during the day. Irregular dropping in is hard on a teacher but you should ALWAYS be allowed to spend time in the classroom helping or observing. It is a basic safety rule. Your child is likely far better off, and far safer, out of that public school district.

 

[Mama_to_Grace]

Thanks everyone for your comments. I have read The Explosive Child by Ross Greene and use CPS often. The Neuro psychiatric who diagnosed my daughter was a colleague of Dr Greene. I have also read The Bipolar Child and this is what really got me to start thinking about Bipolar as a possibility. I know it overlaps a lot with AS, but her separation anxiety and mood swings really are extreme. They are caused by frustration so perhaps you are right-it is all within the context of the AS.

Her anxiety is perhaps the most debilitating aspect of her issues. It causes her to be very reactionary and "on guard" which leads to exhaustion and meltdowns.

The school thing really upset me at the time. When I had the private Neuro psychiatric evaluation done, they gave me a 26 page report of all the results of the testing. On those results she showed a drastic difference in her memory and processing skills and I believe this is her problem with reading. If you gave her a list of even difficult words she can read them to you with no problem. But if you give her a paragraph of simple Kinder level words she cannot read it or tell you what it says. I believe this is a processing problem. Perhaps she spends her energy on reading the words but cannot understand the context/meaning when there is a string of words for her to understand. Words are too vague for her. She is profoundly gifted in math-where numbers are finite and she can work with them in her mind. But words are difficult and she becomes frustrated if I even suggest we try to read. It makes me sad because the public school would have just pushed her along from grade to grade without addressing this. The private school doesn't do much better-mainly because I don't think they understand the differences in her processing. I am considering getting her a reading tutor-but I don't know if I can find one in our small town that understands how to address these things.

It is very sad when I see her peers come into class with 100+ page books they are reading when my daughter cannot even read a Dr Seuss book or K level book. I really need to find a way to remediate her reading but dealing with the behavior issues has been my full-time focus!!