AS worse in teen years?

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MyTeenHasPDDNOS, first I want to tell you that I am genuinely moved by your first post. Take heart. It takes some of us YEARS to get to the point where you have already come in a very short time since learning your daughter's diagnosis. Your degree of acceptance and willingness to try to see things from her eyes will be invaluable to both of you.

I don't know how to contact an administrator. I think that asking someone to move the parts of this thread starting with myteenhaspddnos's first post onward to a new thread would be helpful. I may have missed this all together because I think I had responded earlier and don't feel like I really had anything to add to the original question.

Myteen...to prevent this from happening again (post going where you didn't mean it to go), always make sure you start a new post when you are looking at all of the titles of the threads by clicking on the button in the upper left-hand corner that says "new topic." If you are reading a topic and hit "reply" and type a new topic into the screen that opens, it doesn't recognize it as a new topic and it will just be added to whatever topic you were just reading.

I know because I have done it before. You'll catch the hang of all of this. We have all been newbies at one point or another. Hang with us. We'll help.

I am going to ask some clarifying questions, so we can better help you, OK?

What country are you in? This well help us tell you what help might be available where you are?

I am assuming she has been in therapy because of the cutting, and then they diagnosed her as PDD-NOS in the course of treating her for that, is that right?

How long as she been in therapy? I want to make sure I have this right, because sometimes my reading comprehension can be a little dodgy. Did you mean that your were upset b/c she got a diagnosis and the therapists did not tell you promptly, or that you just wished you had known sooner?

Cutting (and hygiene) can be a function of sensory issues. People on the autistic spectrum have an atypical interpretation of neurological information in the brain. Something that feels good or neutral to a neurotypical (someone with regular brain wiring) can feel unpleasant or painful. Additionally, something painful to a neurotypical person could feel neutral or good. Some autistic seek sensory stimuli, some avoid it. So the water might bother her, but the cutting might feel good, if that makes sense.

Seeing a good occupational therapist might help get a handle on what her sensory needs are. I know cutting usually has an emotional aspect and not just a sensory one, but the occupational therapist might be able to get her to switch to something else, or at least give you more to go on in conjunction with the therapy she is getting for social/emotional things.

I'm so sorry for your pain and your daughter's. My eldest is almost 12, we are struggling to get her diagnosis recognised and we have been let down by health professionals too. My daughter is in denial and has many problems like your daughter. She also behaves politely and calmly with others and is explosive and awful with me.

Perhaps you could take her out of school and she could do some distance learning courses, so she'd still get her education (like home-educating) but all the pressures of school would be gone. She probably is so stressed about the socialising side and knowing she is different. High school is often when things hit the fan for ASC girls.

Does she know her diagnosis? It would be better if she did as she would know her issues are not her fault.

We live in Northern Virginia, USA.



She has been under the care of Pediatricians since birth and Pediatric Psychiatrists since age 10. Her diagnosis at age 10 was ADHD-Primarily Inattentive Type. At age 15 we determined she had been hiding depression for 18 months and then she was treated for that. So the only diagnoses we ever were aware of were ADHD and Depression. Fast forward to the present. I put her in therapy with an individual therapist (first time she ever had therapy other than medication management with the Psychiatrist) so she could get help with depression and anxiety related to school work, social life, learning to drive, College search, etc. I was concerned she was close to adulthood and not really acting very grown up. Also, she avoided talking about any feelings and also lied to me repeatedly about her homework and never could verbalize why she didn't do it. She agreed to the therapy. A few weeks into therapy I discovered the faded scars and advised the therapist who did not yet know about the cutting. I honestly had no idea her anxiety was so terrorizing and paralyzing in terms of homework, driving and college. I did not know she had emotional pain so unbearable and no voice to discuss so she felt she had no choice but to take the anger out on herself through self-injury. I had no idea she was so deeply disturbed. I am in therapy to deal with my own emotions regarding my blind faith/trust in doctors and my lack of insight regarding her feelings. I am so sorry I missed so many things. She has been a brilliant actress but once I saw the signs that she was not where she should be socially or emotionally and then discovered the scars I realized I had to figure out what was causing her unbearable pain. None of the medical professionals caring for her seemed interested in a root cause - they only were treating the symptoms (anxiety, depression and cutting). I read three books on cutting looking for answers (two recommended by her therapist). When I requested all of her records and read every page to get a complete medical history I found a "problem list" from 2008 and 2011 where 9 psychological diagnoses that were listed but NEVER communicated to us. We are still trying to find out who put these in the medical computer system and when. We are trying very hard finally to make her care the following: comprehensive, integrative and competent. This is proving very difficult.



4 1/2 months of individual therapy. We are going to add family therapy next.



Both. At least 5 years ago some medical professional/expert determined she had 9 psychological diagnoses but only communicated to us about and treated her for two of them - and then only with meds. NEVER told me she needed individual therapy, family therapy or anything at all regarding any developmental delays on the autism spectrum. For this I am both deeply saddened (for losing valuable time) and incredibly pissed off (at the unprofessional, unconscionable and incompetent care). We continue to battle to find out just what diagnoses her current providers are treating and incredulous that they have only mentioned family therapy as an after thought. We now know she has a big problem with family members and will all work together to determine how to best support each other as a family.



This is fascinating to me. She claims to have a very high tolerance for pain and I can confirm she has never been whiny or much upset when injured. This is not because she was taught to hide pain or to "toughen up" but she just has always rolled with the punches in a stoic manner. She has always loved baths and water - both hot and cold. Frequently over the years she will come out of a shower or bath having not cleaned anything or washed her hair because she forgot or her purpose was the sensation and not cleaning! Now she bathes in the middle of the night to avoid cutting - it is on her safety plan. Again a week will go by without her washing her hair even though she has been in the tub frequently.

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I think her therapist is covering this with the dialectical behavioral therapy.

Thank you so much!

Last edited by MyTeenHasPDDNOS on 13 Jun 2013, 3:31 pm, edited 2 times in total.

I have thought of this and offered this option to her. It would be much more affordable than the small private school she now attends after nearly failing out of public school. At this point we need her buy-in on everything. I am researching so many creative alternative education options for finishing up her senior year. She does seem to like her school and has done a great job there of seemingly fitting in. Funny all her "best friends" are boys on the spectrum - mostly with Aspergers. They are easy for her to relate to. They don't require much emotion from her. Uncomplicated relationships. I should have known!



We are having her evaluated by a developmental pediatrician for a diagnosis - to confirm or rule out PDD-NOS or whatever they call it on the new DSM 5. I found the diagnosis in her file from 2008-2011 but it is not a current dignosis so we he to hve her testeed to confirm or deny it. I know in my heart she has significant defeicits in social/emotional functioning and also in communicating feelings. Her Verbal IQ is 99% while her non-verbal is 50%. I have done extensive research on this in the last week and I am fairly certain that she is on the spectrum. But I am not qualified to make that determination. Once there is proof, I will let her therapist help us decide how to tell her. She could get angry and turn that anger against herself more. Or she could potentially be relieved like you said, to know the issues are not her fault. That is what I hope is true - the latter.

Last edited by MyTeenHasPDDNOS on 13 Jun 2013, 3:32 pm, edited 2 times in total.

While you are looking up information, you may want to look up Nonverbal Learning Disability NLD or NVLD. While it is not an "official" diagnosis in the DSM-5, there is a lot of good information about it.

Here is something helpful: http://www.pediatricneurology.com/autis ... 0Disorders.

I am really impressed with how quickly you are grasping and integrating all the new information. The problem with these high functioning kids is that they can hide their issues so well. Until, of course, they can't. At some point life catches up to them.

There is no point in looking backwards, and it sounds like you are quickly moving forward. Trust your instincts. Keep your eyes, ears, mind and heart open, and then trust your instincts. Don't let life or convention get in the way; if you know something is wrong, act on it.

I hope it all works out. There are no guarantees, but one can hope.

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I am trying to figure out how you guys are able to have the quoted material highlighted in white. Let's see if this works.

OK. I realize I am confusing non-verbal IQ and non-verbal cues in communication. The first affects learning, information input like reading and manipulating data that is seen through the eyes and the latter is about relating to others socially. She has deficits in both. I wonder how many kids with ASDs have this phenomenon.

I am trying to figure out this stuff on my own because the experts have failed. I have faith there are some experts we can still find that will truly help us get to the bottom of what is wrong and what is fixable and what we need to learn to live with/tolerate. It will unlikely be anyone supported by our insurance so we might be taking a huge chunk out of retirement funds to pay for care out of pocket. I told my husband I do not want a retirement without our daughter alive, healthy emotionally and an intimate part of our lives in it. There isn't anything more important to spend money on.

I am in a state of emotional shock reading her notes from her therapist we just got - the one who likely put all of those diagnoses in the medical computer system. He repeatedly wrote in his notes that he recommended individual psychotherapy and also family therapy but I am serious about this - HE NEVER TOLD ME, THE MOM! He was treating a 13-15 year old. SHAME ON HIM. And shame on a medical system that gives medical emancipation to an adolescent in a case like this. She repeatedly told him about social troubles and these caused a deep depression she was able to hide from him for 18 months. Why didn't he ever discuss their "private" discussions with me? You are not breaking patient confidentiality to tell the MOTHER that the CHILD needs individual and family therapy! I could have told him her struggles socially were since birth. We might together have figured out more testing was necessary to rule out something neurological. But I am describing comprehensive, integrative care and it just didn't exist. We always thought she was bright, quirky and highly introverted. We did not see how deeply disturbed she felt about her inability to make and keep friends. HE KNEW THIS but did nothing other than listen to her once a month to do med management. Did he think throwing pills at it was a cure? For what amounts to extreme social anxiety turning into depression? Really? Pills treat that? I was always there with her for the beginning of the appointment and at the end. All he ever told me was med dosage changes. I had no idea I should be requesting his notes after every session. Who does that?!? It was years ago but I have to believe my memory has not totally failed me. HE DIDN'T TELL ME SHE NEEDED THERAPY! I erroneously thought the depression was endogenous and that the meds were what she needed and they did work for almost two years – but only to mask an underlying problem that was never really addressed except from a biochemical standpoint.

What I need to tell her ~ I am so sorry my sweet daughter - that no one really listened to you, that you kept your secrets from me and revealed them to a stranger who did not ensure your needs were met. We trusted him too much with your heart and soul and for that I need to forgive myself and move on. I am so sorry I am not safe for your secrets but strangers were/are. I didn't know the right questions to ask of you or them. I'll do better now.

I am getting twice a week help now and will add the much needed family therapy piece and hopefully we’ll establish family ties where everyone feels safe to tell their deep dark secrets and let family connections help them rise above the pain. What has developed now is that she has had to deal with her pain in secrecy and she is confused and angry at her social failings and she takes it out on herself in desperation for relief and in a twisted way cutting does a good job of relieving pain.

This has turned into my personal diary. I am keeping everything here in another document to take to my therapist to help me decide where to go, what to do, to leave nothing out so we can do the right things moving forward.

I am so sad her helpers have missed the value of her mother - the one who has unconditional everlasting love and support for their patient/client. In all their infinite wisdom they WILL NEVER MATCH that commitment. Who else has the insight and instincts of a mother? I may not have a PhD in Psychology but I know my daughter better than anyone. Veiled by my own limited experience in understanding the brain, I may not have seen the truth. But with their help and in conjunction we could have. I know I need to move past "could have" I just don't want to make the same mistakes anymore. Surely bringing her to those who did have the experience/education/degrees was the right thing to do. I did that. And I feel like I sold my daughter's health to them. I was naive. They let me do the intake and then left me out of the rest. Idiots. They all piss me off and I am shaking my head at the fact I PAID them to help her and their incompetence has basically put the truth under wraps for 7 years and she is the one who has suffered – the patient in their charge, for which they received $$ because THEY DID NOT INCLUDE ME. WTH is wrong with mental health care in our country that adolescents are treated in isolation with secrets kept that could actually heal them if given the light of day? The so-called experts in the profession are perpetuating the stigma they so often say is problematic. They feed the stigma by hushing up what their clients say under their confidentiality clauses, treating them in a vacuum away from the data (in the case of an adolescent - input from mom, dad, brother, teachers, coaches, etc.) that could shed light on the true problem, treating their patient's symptoms only instead of rooting out the cause of their addictions, depressions, anxieties and negative behaviors – because God forbid anyone actually get at the truth as that may be too painful to admit (again, the stigma and shame rule here) or take too long to uncover (Big Pharma rules here - pills are quicker and less expensive than long term therapy). They have literally made me sick.

If anyone had ever told me that to get better and stay well that my daughter needed individual therapy, family therapy and social skills training I would have made that happen. I am now. I pray it is not too late.

Whoa - that is sounding strangely familiar. Wow.

Thank you all so much! I have ideas to take to whatever next expert we pay to help us.

Thank you! I personally have a need to process the past. It is currently traumatizing me. I am so angry and sad and will be putting it all to rest for my own health's sake. Because of my personality (data driven) and my tendency to become depressed when emotionally depleted (genetics) when my own anger is not processed, I have to dig and deal with it all. My therapist is helping me with that. After all if I am depressed, my instincts are impaired. So my dealing with my own shock, disbelief, regret, etc. will help me to remain cognitively alert so I can fulfill the role of being her fiercest advocate. I can only do that if I am well. I am trying my best. Thanks again for your encouragement.

Honestly, I feel I have learned so much more from communities like this one than I ever could have from the experts. There are a few things I definitely needed from the experts - the initial label is one, because I would not have in a million years consider an ASD for my son - but after that, each person is so unique that what I feel I've needed to help my son is a community of voices and personal experiences. That is what places like this give me. As a mom, I need to get inside my son's head and figure out what he is experiencing, and then figure out why. It has never been easy, but I've been lucky that I got that first key much earlier than you did. Another useful thing I did get from the first expert: the charge to read, read, and read. Learn all I could about ASDs. That was useful, too.

Again, best of luck to you. I am sorry it has taken so long and that so many professionals were not there for your family in the way they should have been.