Frustrated beyond belief!!

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My oldest son (21 years) I believe is on the spectrum, he has been seeing a psychologist for what I thought was an ASD evaluation. I should have gone with my initial feelings on this psych which were that he had no clue. Any way I met with the doc yesterday, to give background and my concerns re my boy. I tell him we have a few family members with kids on the spectrum, then he asks when was my youngest diagnosed. I tell him J was diagnosed with Aspergers five years ago. The doctors reaction was "Oh so he doesn't have autism".

He tells me at the end of the session (he spent more time wanting to know why I was a single mum and where the boys father fits in, in the relationship ) He tells me that he doesn't believe C has autism becuase he doesn't have echolalia and because he can put him self in someone else's shoes, he's empathetic. He then goes on to say " some individuals want to be autistic, because it gives them a reason to avoid society". He says C just needs to be pushed more and to try harder, yes he may have some autistic traits he may also have a neurological condition that he the doctor doesn't know about. But he believes he can work with him.

He told my son during his first 1 hour session that he didn't think he had an ASD. How can he say that based on 45 minutes - 1 hr observation and no back ground? When I went in to see this guy, it was the 3rd session so in total he had only spent maybe 2 hours with C and an hour with me=3 hrs. No forms to fill out, no tests to be done, nothing.

Here are some of the things I told the doc;

C was 5-6 weeks prem he didn't have the sucking reflex to start with, he eventually got it and then wanted to be constantly nursed.
Walking: I think he walked within the "normal" time frame, it was after he was 1yr old, he did walk on his toes though, I bought him heavy little boots and would physically make him walk flat on his feet. He went from toe walking to stomping.
Talking: I don't remember to much about C's talking. I do remember him saying things like seegugu I knew this meant swimming pool, he could say dink=drink, hungy=hungry.
He used to scream if he had a hair on him or if a fly came any where near him.

The doc asked if C had a favorite toy or blanket, perhaps one to take to bed. Not that I remember. He slept in my bed (because I couldn't get him out) until he was about 9.

Kinder and day care, C hated. He would scream when being dropped off, so bad we could hear him at the end of the street. He had to be dropped off with the one worker or he just wouldn't settle.
School, he hated he would cry and scream all day, he didn't get much out of school didn't really make any friends, kept being put in remedial classes etc etc He has retained very little from school.
He did have one friend only really when he was growing up, this little boy kind of looked after him but was mean to him at the same time. Even then when this kid came to visit, C would tell me to say he was either sick or grounded, because he didn't want to play with him.
High school was similar to primary school, nothing much got retained. The only class really that he excelled in was automotive and then engineering (but that was just the practical side, not the theory) He sat a engineering test in year 11 and one of the questions was, give the answer to ??. C did give the answer but his teacher gave no marks because he didn't give the working out. C was furious for about 18 months about this because the question hadn't asked for the working out. His teacher said but all the other kids wrote the working out. C refused to do engineering again.

I told the doc that even now, C has no friends. He knows some people from work, but never calls any one or has them over. Even now still C puts every thing in his mouth, the remote control, my hair clips, straws, etc etc. The doc's response to this was , why does he do that? " Hmmm I don't know, it's like he is sensory seeking!" He annoys his brother to the point where his brother is crying and begging him to stop. C's response" I didn't know, I was just joking".
I told the doc: C likes to take my hair clips, he clicks them and squeezes them, he does this all the time. I also told him, C can reformat the computer and do other computer stuff, but he can't explain how he knows this. He did a short brick laying course and was getting top marks, he can level a brick wall by sight, but can't do the math and could deal with the tradesmen on the sites.
I told the doc that I have to organize my sons entire day or nothing happens. He will avoid all social interactions when he can. He doesn't like change, he doesn't like new people, it takes him a while to feel comfortable.

There is so much more I could have told the psychologist, but clearly he'd made up his mind about C within that first session. I am so frustrated.

Not everyone considers AS a form of autism. It does not mean they don't recognize it as a neurological phenomena.

Concerning this psychiatrist's views on AS/Autism and empathy, they're wrong. I knew a guy who had classic autism, was verbal as an adult, not as a child and was a complete empath to the point where he didn't like to watch the news.

And even if an adult with AS doesn't actually feel bad for someone in certain situations, they can still usually reason that the person themselves feels bad and they need to be sensitive to that.

On another note, stop organizing your adult son's day.

Incompetent doctor.

Evidence:
Not all autistics have echolalia. This includes classic autistics.
Yes, Asperger's is a kind of autism.
Yes, autistic people can be empathetic.
There is very little evidence that "some people want to be autistic"; nor would the solution for someone who has social phobia and wants to be autistic be to "push them harder".
You may be able to tell that someone has an ASD within the first hour, if it is obvious. But many of us have gotten very good at hiding it, and to a non-expert it may take more than an hour. Saying categorically after an hour that someone does not have an ASD is a premature judgment.
His focus on your being a single mother suggests that he may have focused on that as a source of your son's difficulty. When a psychologist does this, it's a bad sign: It means he has decided that everything is due to one magical cause. This is almost never the case in real life, but it happens all the time in Hollywood.

Find a second opinion from someone who actually knows something about autism. It seems to me that this fellow doesn't even know much about psychology to begin with.

re. your son's putting things in his mouth: It's probably a form of stim--producing interesting sensation. The mouth is quite sensitive and putting something in your mouth gives you a lot of data on what the thing feels like.

Up date;

I have found another doc, one that specializes in ASD's. He took loads of info off me over the phone and we have a tentative booking for two weeks from now. The first one didn't want to speak with me at all, he only did so to shut my gp up.

As to the organizing; yes it needs to stop. However if I stop completely, he doesn't get to work (he has a part time job) his dog doesn't get fed, his clothes don't get washed (no big deal most of the time, but when they are stinking out my house and he has no clothes left to wear except dirty stuff, it gets to be a problem) he also has social security forms to be filled out and appointments to get to. If I don't remind him of these he loses all income, I'm not in a financial position to carry him. He's a good kid (actually shouldn't call him a kid he's an adult), willing to do stuff he just needs support in organizing himself and to be reminded that he is an adult and is capable of doing things himself. If I stopped and I have done from time to time, he stops. He spends his days sitting in his room either on his xbox or watching you tube. He has zero interaction and ends up even less motivated and more depressed and grumpy. I would love to stop.

Great to hear you've found someone who specializes in ASD's - the first doctor sounded completely incompetent and obviously has no experience with ASD.

About organizing your son's day - perhaps try setting out his day in a chart as a visual reminder, and stick it on the wall, somewhere where he will see it. Adding pictures/symbols will help a lot too - for example, a picture of a dog on a leash together with "take the dog for a walk". And no, a high-functioning 21 year-old isn't too old for symbols - even a 40-year old NT will respond quicker and more easily to a list with symbols or icons, than a purely written list.

C sounds a little like me as a kid, .

I PO'd an engineer when I let it slip that "I understood vibration analysis at 7yrs old". another once said "thats scarry" and I replied "Yes that could of killed someone" to which he replied " No, that you know that and the engineer/designer didnt". Couldnt tell you how many times I also hear " I knew I came to the right person" or " We'll ask gadge he'll know" When asked "how I know" I have no answer,

I also did physisc in my head and didnt write down my work to show the teacher, But everyone else did, I felt that if I wrote down the work, I would be thought of as stupid. Or even worse the teacher would know I wasnt doing it his way

science and math were a breeze, but I struggled with english and social studies.I played with everything as a kid. When other kids would see me being a "wierdo playing with the garden hose" I was analizing the movements.An arm out the car window a study in aerodynamics ........ aspie mind

as for empathy, I see the sadness someone is feeling, and actually feel for them, but dont know what to say or do that will remedy the situation, thinking over and over and felling even sader that I cant fix this with words or a hug, to some I might look frozen or dumb. but believe me these feeling. they are there. I also cant watch,the news even a movie that I've watched 10 times will still get tears rolling

Yes I have a pile of dirty clothes, I'll get to them when, theres enough of each type for a full load and thus eliminating sorting
I just buy enough clothes to last a while. Just dont feel like running around the house to put 2 socks and 2 t's here then pants there. .. aspie mind,

Yes I forget things, and Yes still a kid at heart. I didnt move out till I was 21 Neither one of us, single mom, could make ends meet. and I only did because my sister was now working and felt I could...and did

point is this. I'm only 90%na but 110% aspie. some blanks will never be filled ...aspie mind
As Parents or Partners go...be one.
My X couldnt fix a thing ...Should I demand that she could!. just a little help, here and there...aspie mind



And just now a friend of mine reminded me "that its my turn to bring dessert tonight" and Yes I forgot because Im thinking about this subject!...aspie mind

see, that wasnt hard..

plans are being drawn up as we speak for my robot wife, aspie mind.......

Hi Aurea,
Your case sounds like mine - I'm not sure the 'professionals' I've seen have lived up to their titles.
My boy has just turned 13. We have struggled all through primary school with the teachers making us feel terrible. His behaviour in class was disruptive, he was being bullied and would often lash out. He seems bright but he just wasn't getting on the way you'd expect he should be able to and he has massive social issues.
He has no sense of another person's personal space, can't get a handle on when he's boring the backside off someone, he's only interested in video games and cats, he is disorganised, reclusive, has melt downs when he's stressed, seems incapable of noticing what other people are feeling unless you hammer the point home to him - no sense of consequences, flat monotone voice, funny walk, no empathy.....I could go on.......

So finally, he started secondary school and clearly wasn't coping. A friend who is a nurse nudged me in the direction of a description of aspergers and a lot clicked. We sought a diagnosis via our GP and ended up at the local CAMHS unit.

The first interview, which was with both me and I my son, seemed unremarkable - it lasted about an hour - but when we got the write up, there were basic factual errors about our family circumstances. My husband works part time and does most of the childcare as I run a business. They mentioned my husband as doing 'ad-hoc jobs' and failed to mention my job at all. The description of our family circumstance sounded chaotic - as if my husband were in and out of work and as if this was our sole income. I thought this was very insulting - because surely, if ASDs are genetic, then perhaps having a mum who has the more normal paternal role would be relevant. I have come to consider that I may be a 'mild' aspie myself and would think this background might be a consideration.
There were other factual errors too - it seemed as if they hadn't really listened.
Then several weeks later we had another interview - they spoke to my son for about twenty minutes and me for about an hour. I tried to do my best to accurately describe his behaviour. We had filled in questionnaires, as had his school. About four days after this interview, we received a letter asking us in for an ADOS - the next day. I scrambled to take time off work and took my son in. It was the eve of his 13th birthday - something that I'm now becoming suspicious of. The process of getting to the point of the ADOS had taken months - and all of a sudden, we were called in on almost no notice - on the eve of him becoming an adolescent. I find myself wondering if they made the assessments of him based on criteria for a child or for a young adult or adolescent. They discussed 'games' when they mentioned the tasks - so it seems they set him one of the children's modules. He's already learned coping machanisms that a child's assessment wouldn't make provision for.

Anyway, three weeks later we get called in for a discussion of the results and we are told that he doesn't have Aspergers - despite him having problems with social interaction. They showed us the write up of the ADOS. On every section they seemed to agree that he showed AFS traits - flat voice, restricted interests, lack of social skills, very specific recall of dates - etc - everything except the tics we had reported - which they say they didn't see (in the whole hour and a half they'd spent with him in total - so wow, they must be right!) but every single one of these was countered with a denial.
Yes he has a monotone voice but he sometimes sounds less monotone when talking about something he likes. Yes he is a bit expressionless but he smiles when talking about his cats. They even said that yes he has restricted interests but he does have more than one interest so he can't have Aspergers as people with Aspergers generally only have one interest - which sounds like C**p to me.

We tried to explain that we didn't agree and we were effectively told there was nothing much more they could do. When we asked about help for school (which we really need and the school needs) the Dr said 'but he doesn't have a diagnosis' - I felt like screaming. He doesn't have a diagnosis because you say he doesn't - but he still has all the problems that brought us here in the first place.
He has difficulty making friends, he's getting bullied because the other kids think he's weird and he's totally miserable. I read your description of dealing with your 25 year old son and I could see my own future stretching ahead of me. I can't see, that without some external support, we're going to be able to let him go out into the world. I can't imagine him managing. It terrifies me.
I spoke with his guidance teacher at school who was astonished that we had not had a diagnosis - she had assumed it was blindingly obvious that he has AS.
So what next?

As an educator (in the U.S. though) my counsel would be to escalate as quickly as you can.
I don't know if you have something like a public agency for civil rights, but if you do it makes sense to appeal or file a grievance as soon as you can. Some kinds of complaints can become less compelling over time.

And, in the appeal process, a lawyer once told me that the side that wins is usually the side that seems more reasonable and doesn't resort to emotional appeals. I'd say the factual errors in the report are totally to your favor and put the burden of proof on the evaluator.

Peter