Another dumb Aspie question?

Discussion in 'General Parenting' started by TeDo, May 13, 2011.

  1. TeDo

    TeDo Guest

    So I had a facilitated IEP meeting for difficult child today (LOOOONG story) where the autism specialist let her thoughts on what was going on be known to me during a break "off the record because she's on the school's payroll". Anyhow, after the meeting was over, I called her to get some advice from her perspective "off the record". I know her from the community theater group easy child/difficult child has been involved with for the past 3 years. We were talking and she asked me how easy child/difficult child was doing. I told her some of the Aspie traits I've begun to notice (since I've become educated). She laughed and said that's funny because when she first met easy child/difficult child, she noticed some right away. As we were talking more about it, I told her that easy child/difficult child's therapist (who diagnosis'd difficult child) asked me at easy child/difficult child's first appointment last week if there were any developmental delays for easy child/difficult child. There weren't any but he has some of the very same behaviors as difficult child but that manifest in different ways and in different contexts.

    Can someone have Asperger's if there were never any developmental delays? easy child/difficult child has obsessive thoughts at times, takes things very literally sometimes, is socially awkward in that he doesn't recognize personal boundaries, has immature reactions when things don't go his way, is perfectionistic especially when it comes to schoolwork, etc. I was under the assumption that developmental delays are like a prerequisite for an Autism Spectrum Disorders (ASD) diagnosis.

    Guess I need even further education from my "experts". Thanks for being so patient with me.
  2. HaoZi

    HaoZi Guest

    When it comes to specifically Asperger's, there is a LACK of developmental delays outside of social delays. This is one of the reasons it's generally not found until Aspies are older.
  3. Marguerite

    Marguerite Active Member

    Certainly. Girls especially don't always fit the classic stereotype. I was actually talking about this yesterday with easy child 2/difficult child 2, who at 24 is in her final year of a diploma in Early Childcare. She was able to present at her last class, some SpEd strategies we put in place for difficult child 3. She has to re-present it more formally, but we got talking about a lot of it. Also, we were talking to the college disabilities person over the phone (easy child 2/difficult child 2 needs her as an advocate right now, there have been some right royal SNAFUs not of my daughter's making.) So tis was very much in our minds.

    Siblings of Pervasive Developmental Disorder (PDD) kids often have some Pervasive Developmental Disorder (PDD) traits themselves, but not always enough for a diagnosis in their own right. easy child 2/difficult child 2 was originally given a diagnosis of ADD (inattentive type) and we were told she had some Aspie traits but not enough for a diagnosis. However, as she has gotten older we have seen more evidence. This is unusual, you usually notice it more earlier and less later. But I have seen something similar in our 55 yo friend who was diagnosed with Asperger's only a year ago (we all saw it!). Since he has been diagnosed, more traits are apparent, as if he finally has permission to be himself. I don't know...

    easy child 2/difficult child 2 not only had no developmental delays, she actually was considered to be advanced. easy child similarly, was advanced. I wanted to fight to get easy child into school early, because I felt she needed it. With hindsight, I wish it had been possible. We nearly succeeded twice in getting her skipped a grade, but our education authorities here don't like doing that and fought. But with easy child 2/difficult child 2, the need was even more urgent - like easy child, she had been in Long Day Care from infancy and as a result, and been well socialised and had lapped up the stimulation. Both girls did the pre-school "readiness for school" two years running (because they were capable) and easy child 2/difficult child 2 was looking at a third year of it and was bored. We had easy child 2/difficult child 2 assessed at age 4 and she scored 145, with no splinter skills. Again with hindsight, the lack of splinter skills was due to the testing methods done on a 4 yo, there is far less scope for the finer detail. They did a WPPSI, and the more accurate testing a few years later, WISC III, is when the splinter skills were found. Interestingly, easy child 2/difficult child 2 was also assessed with Vineland Adaptive Skills to determine her social skills, and she scored very high. But a lot of the questions, I recall, covered things like "Does she read newspapers and watch the news?" which she did, and "Does she know the procedure for writing and mailing a letter?" which she also did. These are also issues of control of her environment, of adult skills she was actively seeking out and teaching herself, because she was pushing herself hard to do as much as possible, as fast as possible. I was quite disabled physically at the time, and easy child 2/difficult child 2 seemed to appoint herself my carer. She has always been a cuddlebunny, very physically demonstrative, and even as a baby, before she could walk, would look after the younger babies in the child care centre nursery. She would see a dropped dummy (pacifier) and crawl over to that baby, pick up the dummy and put it back in the baby's mouth. The staff had to stop her because once dropped, the dummy had to be sterilised. She did learn fast, though, and began picking up the dropped dummies and taking them to staff.

    At home, if I dropped my crutches and began to look like I was getting out of my chair, she would rush over and pick them up for me. She was 2 years old when she started doing this.

    We got her into school early, at age four and a half. She was only two weeks younger than the previously youngest classmate, whose birthday happened to be on the cutoff date. She rapidly showed ability in the top of the class, was one of the first to read fluently. She had started to write her own name at 2 and had been doing simple maths problems at 3.

    easy child 2/difficult child 2 presented as a child genius with no problems. But over the next few years, some odd things showed up. She clashed with the school principal increasingly, the principal got very frustrated with apparently "immature" and defiant behaviour which, when I talked to her, I was able to identify as odd obsessions, she had to find out about something NOW. For example at a school dance rehearsal when the kids were supposed to be watching the teacher and waiting their turn to dance, easy child 2/difficult child 2 was lying on the floor and would not get up. She later told me she was trying to match the sight of the other kids dancing, with the sound and feel of the vibration through the floor. She was prepared to continue to defy the principal and the teachers to do this.

    The Obsessive Compulsive Disorder (OCD) became increasingly apparent as she got older, as well as some learning difficulties beginning, mostly to do with memory not being laid down properly as she got older. ADHD medications resolved this problem at least partly.

    Now she is an adult, it's as if she has given herself permission to be herself more, to thumb her nose at the social conventions that have always chafed. As a result, she masks it less and so the Asperger's stuff seems more apparent. She still doesn't have an Asperger's diagnosis, but it is our working hypothesis. She asked her pediatrician (in Australia, the pediatrician is the main management specialist until the child is 25) and he said, "You don't have Asperger's because you make good eye contact."
    She said, "I make good eye contact with you, for two reasons: I know you, and I work at it. I know I have to."
    She also has some face blindness but never realised this was not normal, until a few years ago when there was a documentary on it and she said, "Isn't everybody like this? You mean, some people know who they're talking to really easily?" She has since developed strategies to cope, which include measures that actually increase her attempts to make eye contact.

    When we were talking yesterday it was less about herself, and more about autism in general, especially the 'missed' diagnoses in siblings. She had a friend at early high school who had a profoundly autistic brother, we were talking about him, and about the sister. She commented that their mother was absent, even if she was physically present. Those two were neglected, she felt, and she says now with hindsight she can see a lot of traits in her former friend. But as we talked we also discussed other traits that are definitely not Asperger's. Then I remembered another person I know whose behaviour is very similar - again, female, and with breaks from reality. We were discussing their attitude to truth and lying. Her classmate used to make up ridiculous fantasy stories about how her boyfriend was a famous teen pop idol (think a girl these days saying her boyfriend is Justin Bieber). Stories that were obviously untrue, such as "He came to see me yesterday, he slipped into the country incognito, he flew back to the US this morning." Yeah, right. She turned up to school with a letter supposed to have been written by him, signed by him, but written in the same pink glitter pen she herself used in her diary. And the signature was an exact trace of the one printed on the poster on the wall of her room. When her classmates challenged her with the obvious lie, she got very angry and it caused a permanent rift between them all. Even though easy child 2/difficult child 2 knew the girl was lying, she was pulled into choosing sides and stuck by this girl because she had no other friends. A bad move, socially. The girl left school a few weeks later even though she was only 13. I believe she never went back to school even though it is the law here, very strict, that they stay in school until 15 at least. These days, even longer.

    Talking it over with easy child 2/difficult child 2 yesterday, we were discussing whether in telling lies like this that were related to her fantasy, if the girl convinced herself so completely that her lie became reality for her. Very unhealthy, and a mother who had half a brain and any motivation would have had her in therapy so fast her head would be spinning. But not this mother - I think she had her own fantasies, which included not being a mother. A few months later the boy was removed and put into foster care, where he immediately began to make progress. I occasionally bump into the mother and she fills me in on how the kids are going, she gets to see her son occasionally but supervised access only.

    The other female I know who is like this does have a diagnosis of Asperger's, but this was after I stupidly gave her the information she needed to go push for a diagnosis. I found out a couple of years later that she already had a diagnosis of schizoaffective disorder. Frankly, I think that covers a lot of the Aspie-like stuff I was seeing in her. We were friends at the time, an interesting parallel between me and my daughter in our poor decisions regarding 'friends'. Because for each of us, we got badly burned by that person.

    What I'm saying - I'm wondering if there is a subset of sibling symptoms that overlap into something which can include apparent breaks with reality. It's only a thought. But I also have seen things that look like Aspie symptoms, in those females too. The Obsessive Compulsive Disorder (OCD) especially, as well as the perseverative nature of them even in the face of obvious untruth. easy child 2/difficult child 2 has never made up lies like that, but she has been very insistent on arranging things in her world to her liking. She has always had a strong sensuality, was obsessed with certain textures (satin, fur) from infancy and by high school this had developed to the point where she found a way to indulge her obsession all day every day at school - she made a cover for her school folder using fur fabric. She used a fashionable cowprint motif but it was the feel of it that mattered. And because it was a big folder, OF COURSE she couldn't fit it in her bag and so she carried it in her arms from class to class. So she was able to ensure fur fabric next to her skin. Her classmates and tea hers never realised the fetish, they just saw it as a mark of individual style and ingenuity. And socially it was far more acceptable than carrying her teddy bear to school.

    Speaking of teddy bears, she still sleeps with hers. She did leave a lot of her soft toys at home when she moved out but her favourites are in their very tiny apartment. She also sleeps with the same pillowcase she has had since a very little girl. it is a design no longer available, I had four of these pillowcases and she is wearing them all out in succession. She lovingly handwashes them to ease the wear and tear.

    Academically, she is doing really well. Socially she is struggling, mainly in new or unfamiliar situations. If she has to approach someone in authority that she doesn't know, she often cries. Her anxiety levels are very high, although currently managed better on Zoloft. She's learning to manage this, also she has to hold herself together around her husband who gets upset for her, he hates to see her cry, it upsets him. So she's had to learn to soothe him at the same time as calming herself. She's also learning to help him with his own anxiety issues.

    easy child 2/difficult child 2 has never needed any remedial help, got through school with absolutely zero SpEd services. However, she never truly lived up to her early promise, never achieved as well as we expected her to and as well as we know she could have done. Now, as an adult, she is coming into her own academically. She has confidence in herself and her ability to handle the work.

    When she started her current course, I was there (because of the confidence issues she had then) to help her through the practicalities of enrolment. I did my best to sit out of the way and read a book, but my ears were flapping. I hear her future lecturers telling her, "This is a challenging course; I don't think you will be able to handle it." I wondered on what basis they were making that statement - they did not know her or her work. She was older than a number of the other students, having taken a couple of years off from study. But she looked a lot younger. I'm wondering if they were picking up on that hint of social immaturity she exudes. She will always have it, I am sure. But it is now underlaid by a more age-appropriate attitude which is there when needed. She is developing strengths, surprising strengths, perhaps through having to find ways to cope with her anxiety and Obsessive Compulsive Disorder (OCD). But the childlike projection has little kids gravitate to her. I see it so often at family gatherings - wherever she is, the little cousins are too. The little cousin who was her flowergirl absolutely adores her.

    This is a spectrum disorder. Spectrum means there is a wide range within this umbrella. I also am increasingly wary of using the term "disability" because in our family, we focus on the strengths inherent in Pervasive Developmental Disorder (PDD). We deal with the difficulties but for us we do not accept them as locked in stone.

    One final point - what is developmental delay? I view it as relative. If you have a child whose academic standard is obviously below par, it is easy to identify. But if you have a child who is gifted and amazingly capable, they manage to slide by but do not necessarily reach their (very high) potential - is this also developmental delay? And how can we ever know, if schools especially prefer to not identify such students as having a problem?

  4. susiestar

    susiestar Roll With It

    Wiz only had delayed running because he had ear infections and was dizzy. So he walked holding on to something all the time. Coming home from the tubes he was running for the first time. That was his ONLY delay. His vocabulary was incredibly advanced - by 2 he had more words than a typical 4-5 yo. He was hyperlexic, which means he read chapter books like animorphs going INTO kindergarten. He had NO real delays. He is very much an aspie - no doubt about it on any level from anyone that I trust to make a diagnosis.