Newbie with concerns

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My daughter was recently diagnosed (Just this week) - I don't live in the US but I am still not out where I live and not sure I want things out right now.

So why am I here - because I keep wondering if her diagnosis is true.

Bit of history -

She had gross and fine motor delays - no speech delays, but has always had above average use of words unsuitable for kids her age - sometimes formal sounding. She's hypersensitive (sounds, texture, touch), anxious. Currently also has been found to be dysgraphic. She's had social issues with peers since kindergarden and they have become worse (she's almost 11 now). She started school later than her current peers cause we were told she wasn't mature emotionally.

She had physiotherapy, occupational therapy, psychotherapy (twice, including at school) and also participated in groups to help improve social skills. She is also the target of bullying and the teacher says she doesn't understand social interactions and she has interests that the other girls don't share. She wants friends but is very controlling and seems to recite rules a lot and invades the personal space of other kids.

So far this fits the ASD pattern... but -

She is obsessed with pretend play (with Lego and playmobil and such). With some kids she gets along with no problem - mostly one on one. I don't think she stims... but I may be wrong - she can get hyped when she is stressed or excited. Her eye contact with me and close family is fine. Less so with people she meets (but it could be shyness).

And finally - she had an ADOS plus ADI-R assessment done when she was five and they said she didn't meet the criteria so was sent off to have psychotherapy.

We wouldn't have gone to another assessment - but the school psychologist had her assessed and said that she might have either ADHD or ASD and it would be good to have her assessed again.

The second assessment we had was far more thorough - and included a neuro exam and a review of home movies we provided and also an adaptive behaviour assessment. (and of course ADOS and ADI-R)

And she was found to be positive for ASD but I can't understand how she can get a negative result and than a positive result - especially because the previous test says she didn't have some of the traits the current test did find.

I don't know what to believe and am worried that if we will treat her based on the 2nd assessment, that we might be doing something wrong.

She was also found to have ADHD (inattentive type), OCD symptoms, and low muscle tone.... so she's complicated. She needs help. I just worry because this isn't an exact science and it's based on the doctor/person giving the assessment (but we did go to the top specialist where we live this time, but I was told she seems to be generous with positive ASD diagnosis).

Sorry this was long... I just wish I could get some assurances....

It's very rare for any person with ASD to have all possible symptoms. Plus there are degrees of severity, and it might be possible that your daughter is more to the high functioning end, which would explain the contradictory results from different test.

But that doesn't matter.

What matters is that you and her understand what she is good and bad at, so that she can find her place in the world. Granted having the official label gives you something to "google." That was very helpful to me, but there are other ways to get to know your daughter.

Take a look at: https://www.autismspeaks.org/what-autism/diagnosis/dsm-5-diagnostic-criteria.
DSM-V was published in 2013. So, things have changed a little bit. Diagnosis criteria do change. And frankly, to me, I would not even pay attention to the part A symptoms (persistent deficits in social communication and social interaction). I would only pay attention to part B symptoms (restricted, repetitive patterns of behavior, interests, or activities), which also include sensory issues.

The problem is, people used to think that autism was defined by social interaction issues. If that were true, my daughter wouldn't be considered as autistic. She is extremely social, has zero problem making friends, has perfect eye contact. Yet, she is definitely autistic.

(Autism, in technical terms, is simply excess local neural connections inside the brain, to the point that the unit of communication becomes based on a cluster of neurons, instead of a single neuron. A fully developed autistic person will be social, but will always have special interests/activities. If there are no special interests/activities, then it is not autism.)

Your daughter, like my daughter, is a girl. Autism is designed by Mother Nature for the explicit purpose of contributing to winning wars, just like color blindness. Therefore, just like color blindness, autism is also male-dominated. People can complain all they want, but everywhere in the world, the male-to-female ratio in science/engineering careers has always been male-dominated, with a ratio similar to the male-to-female ratio of autism. Generally speaking, autism symptoms in girls also tend to be "milder." Some researcher like Simon Baron-Cohen would go as far as to put forth an "extreme male brain" theory to autism, and some studies show that children on the spectrum exhibit somewhat more masculine facial complexion https://www.nature.com/articles/s41598-017-09939-y.

Physical shortcomings (e.g. low muscle tone, or epilepsy in some) are common. This is not a bug, but a feature. You have to go back to pre-history to understand the purpose of autism. That was how Mother Nature designed it. Young people without physical issues invariably were drafted into labor and/or defense. The relative physical weakness is what has exempted autistic people from physical labor and direct participation in defense. This has allowed them to develop and contribute intellectually. This is also why autistic people tend to marry late: they tend to find mates only after they became successful with their intellectual contributions.

- - -

(1) You need to develop your daughter from her interests. Guidance and encouragement make a big difference.
(2) Temper issues would be your current area of concern. Read http://www.eikonabridge.com/fun_and_facts.pdf
(3) Coming soon, in another year or two, anxiety would be an area of concern. It can be addressed using the same technique. Read http://www.eikonabridge.com/anxiety.pdf

Finally, a diagnosis of ASD is a good thing. That means you have a special child in your hands. And I extend my congratulations to you. These children are born not to fit in, but to stand out. When raised properly, they'll become leaders, not followers. Being autistic is something to be proud of. Autistic people can see things that no one else can see, and can solve problems that no one else can solve. But for all that to happen, they need to be raised in the right environment.

(All the problems you see out there about autism, do not come from autism. They come from underdevelopment. Autism does not equate underdevelopment: the two are totally different dimensions. Underdevelopment comes from a lack of understanding of parents/educators on how to raise autistic children. Don't let that happen.)

Yeah, this sums it up very well. Based on what you say, there is no question that your daughter has a lot of ASD-like traits (btw special interests bordering on obsessive is actually super common ASD behavior). It also seems highly likely that she is somewhere on the high-functioning end (girls seem to be especially commonly misdiagnosed). Basically all people are on a personality spectrum, and the differentiation between an NT introvert with autistic-like traits and a person who has high-functioning autism is very fine, and realistically it doesn't practically matter which side of the fence you are on. Your daughter is who she is, she has her own issues, a lot of which she seems to have in common with people on the autism spectrum, you are going to have to find what is right for her as an individual! I wouldn't worry too much about the contradicting diagnoses (if you ever need to show proof, you have it), the important part is you have made a great effort to understand your daughter's uniqueness, and can now work on finding a solution that works best for her. I do think that a psychologist/therapist who specifically understands Asperger's would be a great start, if possible.

P.S. I also had no speech delays, I was always extremely verbose, I also have inattentive ADD, loved Legoes and playmobil, no problems with eye contact with family, am high-functioning, and I definitely have ASD. All people on the spectrum are very different (like anyone), but I personally think the second assessment sounds spot on.

Yours is the first reply that gives me a better feeling - because you specifically addressed my question... I'm feeling like many want to tell me to accept my daughter and such - which I do - I love her the way she is and that has nothing to do with the diagnosis. It's just this positive vs. negative result that is killing me as I try to figure out what is the actual truth.

I have to decide re special education for her and I keep worrying that if the diagnosis is wrong, I will be harming her... then I think about how we listened to the first (negative) result and things got worse... so maybe it is time to try a different approach... but this is just so scary - changing her path to something that is a total unknown for me (and for her) and it will require that we send her away to a school that isn't in my town and it makes me sad. Also am worried there won't be any girls in her class or she won't find friends... and she wants friends (just isn't good in keeping them)...

She wasn't diagnosed early because she's high functioning - I do agree. I also have friends who doubt her diagnosis because ... they say she doesn't look autistic... sigh... I don't think there is an autistic look, but it does send feelings of doubt into me and guilt.... sigh... it's not something I can control. I just need to cope with all of this.

That is a super tough decision. You should definitely consult with a good expert (maybe the one who gave the second diagnosis?).

The main difference for me was that my family and I (or anyone for that matter) knew nothing about my condition up until late in college (probably because I was so high-functioning and seemingly normal). I went to a big public school with no accommodations whatsoever and did very well; but I'll just say that just because you go to a school with thousands of people, join clubs, and try to imitate everyone else, there's no guarantee you won't end up unable to make lasting friendships and feel alone. In college it all exploded for me, it became painfully clear that all those years of stress and unresolved issues and not understanding myself had just made everything worse, having no friends to support me didn't help. So I think the fact that you guys know and understand the situation a lot better and a lot earlier is a fantastic advantage. I think she could make it work in regular school with the correct accommodations and if she realizes that things aren't always going to work the same for her as other people, or maybe she would find it better at the special ed school. I haven't been in a special ed school/program, so I can't speak on that subject, but I know some other members have been, maybe you want to start a separate thread asking about people's experiences in special ed schools/programs? You are correct that everything is imprecise and unpredictable, so no one can say how it would work for sure beforehand, her experience could be vastly different.

Either way, I would like to wish the best to you and your daughter!

P.S. You are right there is no required "autistic look", those friends have no idea what they are talking about

Before you get any more negative, I'd like you to watch a video clip from Indiana Jones.



The thing is: you may be mourning about things that have nothing to do with reality. That's the part I hate about our society. We create a fiction, and make everyone suffer from this fiction, while nobody does a thing to really help autistic children.

Adopting a medical view on autism is like a one-way street. Easy to get in, hard to get out.

Let me put it this way: autism prevalence rate stands at between 2% to 4%. Color blindness also stands at 2% to 4%, same with bipolar disorder. Add the 1% prevalence rate of schizophrenia, and these genetic conditions come around 10%, counting potential overlapping situations. That is, 1 out of 10 humans is "defective" genetically, in a major way. Now, pause and think: after 4 billion years of evolution, how come Mother Nature is such a failure in making humans? Are we Homo Sapiens humans the most successful species, or the least successful species?

Nahhh... Mother Nature is pretty smart. Let me provide an example. Certain subgroup of humans have "Innate Resistance" to HIV virus (somewhere around or below 1% of world population). See, in the old days, if there were an AIDS epidemic, 99% of the people would die off, and only 1% would survive. Guess what? For all subsequent generations, humans would then be 100% resistant to the HIV virus and be AIDS free. Pretty smart, huh?

Mother Nature has created and prepared us, so that our species can survive and thrive, even under unforeseen circumstances. What matters is the survival of human clans, not the survival of individual humans. Each one of us is made unique, and each one of us plays a different role that helps to the survival of our clans.

So, major genetic conditions such as color blindness, autism, bipolar disorder, and schizophrenia, are not anomalies: they are intended by Mother Nature. All these genetic conditions help to the survival of human clans.

There is nothing to mourn or feel bad about people with these conditions. These people simply have different roles to play in our society. And historically, thanks to these people, various human clans have managed to survive, until you and your daughter were born and welcome to this world. So, you should be proud and thankful to all these people.

Our society adopts a medical view on people with these genetic conditions because we are... racists. That is right. We think that if someone is different from us, they must have something wrong... they must be inferior. We repudiate people that are different from us.

That's all.

Did you know that our mammal ancestors were tetra-chromats? They saw colors in 4 dimensions. Compare to them, we tri-chromats are all color-blind. Yet, somehow, we the tri-chromats don't feel "disabled." How come?

When you understand that, you'll understand how ridiculous it is to view color blindness (di-chromats) as a disorder/defect/disability/disease. Did you know that in WWII the Allied Forces used color blind people to spot through German camouflage for bombing missions, because color blind people can see through camouflage much better? Why do you think color blindness is overwhelmingly male-dominated? That's right. Because in prehistory, color blind people helped in combat situations, by seeing through their enemy's camouflage. And back then, boys did all the fighting. That is why color blindness in humans happens overwhelmingly in males.

Mother Nature does not make mistakes at 10% level. No way José.

We make mistakes, because we have become racists. We became racists because of taxation and the collective education system. Public schools are the ultimate evil. Because of the introduction of public schools, we chased after "economy of scale" in education. Meaning, in order to save work for the educators, we started to force all children to behave the same. We educated everyone the same way. Anyone that behaved or learned differently, became undesirable.

Autism predated the existence of public schools. In all likeliness, autistic children had a much better life and were raised much more successfully in prehistory. It was only after the introduction of public schools that autism started to be viewed as a problem, as a disorder, as something that needs to be fixed. We grew used to being racists. We think autistic children have problems, because they don't respond well to our "normal" way of teaching. We never pause for one second to think that, maybe, just maybe, autistic children don't have any problems, and that all the problems are on the other side. Namely, it's not that autistic children cannot learn, but it is that we are UNABLE TO TEACH, differently!

- - -

If you continue to hold the medical view on autism, I can guarantee you that your daughter will not develop properly.

You can try to visit a forum like http://www.autismforums.com/ and join the people to commiserate. Yeap, plenty of people there that either look down on their children or look down upon themselves, while doing nothing to get their situation improved. You are welcome to join them, and become part of the negative statistics. You will see how parents there compare notes on using medication on their children, how they call the police to handle their children's violence, and how they send their children to institutions. You are welcome to do all that.

Or, you can do what I do, and get your hands busy, have fun raising your daughter, and enjoy her smile and creativity. And one day you may come to understand why my wife tells everyone that, if she had a choice and have to do it all over again, she would still choose to raise autistic children. I kid you not, if you know how to raise autistic children, you wouldn't have it any other way: life is so much more fun! My two children are always happy and smiling. And I don't hide things from them: everything I write, is for them to read. From young age I have taught them to be proud of who they are.

School? Schools come and go. People shouldn't pay so much attention to schools. There is no need to "fix" your children so that they can learn from public schools (main stream or special needs). Learning can happen at any moment. You don't need to rely on schools to educate your children. You only need to focus on your children's passions, and then expand from there. The least you can do is to stand on the side of your children, and not view them as defective. So, please, no comments like "coping with all this." Nothing is more discouraging when your own parents view you as a defective person. Autistic children are not defective: they are just different. And, frankly to me, they are better people. Your daughter is in all likeliness on the spectrum, and one day she will likely visit WrongPlanet, where she will meet more people like herself. You don't want her to hear how her mother whines in public about "coping" with her daughter's condition. Have some respect towards your daughter, and treat her as an equal-rights human being.

I am sorry I failed to address your question, but I am going to tell you a story of someone who coped.

My father never read any of the literature about my disability or comprehended what it was. But somehow he knew not to pressure me to get a job, even when I was thirty. The rest of the family thought he was crazy, accusing him of spoiling me, saying that he should charge me rent, that he should get me out of the house, get me independent. For years he would hear none of it. He allowed me to write and read my novel to him. To fiddle around researching this and that. Eventually, he relented and got me a part time job, but even then demanded that I only work two days a week.

When my supervisor asked me to work three days on a particularly busy week, he threatened to kick me out of the house. I was frightened and confused. Wasn't I being a responsible adult by accepting more hours? Wasn't I supposed to become more independent? Isn't that what the world expected of me? He didn't think so. He said I was pushover, and that if he had to threaten me so I would stand up to my "abusive" employers. At this point everyone thought he was crazy including me. But I couldn't argue. I lived in his house. I did what he told me to do, right up until his last moments.

Much to my brother's chagrin he left me all the inheritance, the house, the money, his business, everything, and I went to work. I cleaned the house had repairs done whenever they were needed. I began liquidating the inventory of his business. Most of all I invested the money he left me, and am still pursuing my writing career. That's how I learned that my father wasn't crazy.

It's been almost two years since he died. Since then I have gotten married, I've gotten so good a day trading that I can almost make a living off it, and completed the novel he helped write. He knew that I couldn't be spoiled, that I would appreciate the gifts he gave me, and he knew that getting a typical job wasn't right for me (though I still have that part time job).

He was right about his child when the entire world was wrong and....

...so are you. Whatever happens, whatever other people say, if you know your daughter, if you believe in your daughter she can succeed. If you don't believe me, then I prove it, with the son I have on the way.

My wife and I both have autism so we expect our son will too. But we will know him. We will believe in him, and the world will be wrong and we will be right.

Don't worry, just try to have fun

The problem with an autism diagnosis is that some professionals want to fix everything that is "wrong."

I'm 5' 2" and can't dunk a basketball. Is that a problem worth fixing?

A lot of people on the spectrum, if given the chance, find out that they really enjoy doing something. I find that while I often start off really poorly with new things, I can make up for it with practice. I can practice and do repetitive things far longer than the average person. Which allows me to be really good at all sorts of things.

You want to give her the opportunity to find out what she is good at.

I was self-diagnosed with Aspergers Syndrome rather late in life. I analyzed the condition from my unique perspective in an attempt to help others deal with the issues posed by this condition. Here is a link to a short book that I wrote that may be of help to you. The Aspie Code

https://www.theatlantic.com/science/arc ... ce/564932/
How to cultivate a “growth” mind-set in the young, future-psychology-experiment subjects of America? If you’re a parent, you can avoid dropping new hobbies as soon as they become difficult. (Your kids might take note if you do, O’Keefe said.)

I'm sorry to be short, but it's late and I'm tired.

Whether or not your daughter gets a label of autism should not matter as far as what educational strategy is best for her. She needs what she needs. If her symptoms dictate that she needs to be in special education, then that is the best place for her. If not, then she doesn't. There are plenty of kids with ASD that don't need special education, and plenty without ASD that do. Autism is nothing more than a label for the group of symptoms. A diagnosis may help you understand more about her, and could potentially help you gain financial assistance you couldn't get without a diagnosis, but will not in any way change who your daughter is, or change her symptoms.