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Post by sooz on Aug 13, 2014 18:21:22 GMT
Going tomorrow........
anything I should know in advance??
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Post by donatella on Aug 13, 2014 19:09:40 GMT
Make sure you're with him. When dd had hers I was quite incredulous at the stupidity of the psych who did it. Two psychs, one doing the assessment, one taking notes. He gave her a book and asked her to tell the story. She read the words at the top of each page. He was surprised. Ooh, she can read! She's autistic not stupid, stupid!
Then we had the 'oh well she is adopted therefore there must be attachment issues' mutter, mutter. Really? Why?? And even if she does (not really am issue for her) why would you think one precludes the other?
Aaarghhhhhhh
It was painful to observe.
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Post by Deleted on Aug 13, 2014 19:22:17 GMT
EDD was finally having hers recently but I was not there.
She left room after half an hour saying "I'm not Autistic and I'm not mad!".
Haven't heard if the Dr. managed to get her to complete it since, but I'll probably be told their standard "we can't make a child do it unless they want to", which is CAMHS default.
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Post by sooz on Aug 13, 2014 19:58:03 GMT
Thanks
I'm not feeling over confident, especially at having spoken on the phone to the one who will be taking the notes!
Have met the other psych though, nice chap, but ........
Just not confident is all I can say, I hope I will be back saying it was very helpful
Xx
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Post by twoplustwo on Aug 13, 2014 21:57:08 GMT
Stig did his on his own (with the two assessors obviously!). He really enjoyed himself.
Not sure how to put this, I've typed it about 5 times and deleted it every time, so I'll just go for clumsy wording rather than nothing.
I'd take the results with a 'pinch of salt'. ASD overlaps so many other conditions and children with autism have a lot in common and present in a similar way to children with attachment disorder and/or children who have suffered early neglect. The key thing to remember is that a diagnosis of ASD (in theory) opens doors to support (especially in the educational setting). Stig had a diagnosis of ASD which may or may not be correct BUT the diagnosis is of benefit to him so I'm 'happy' with it. I figure that I can always get him assessed again, by someone with a knowledge of ASD and a knowledge of adoption issues, further down the line if the diagnosis ceases to be helpful.
Let us know how you get on.
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Post by daffin on Aug 14, 2014 13:40:22 GMT
Another thing - if you haven't already been and gone - find out in your area is one of the ones piloting AdCAMHS - a specialist service for Adopted children.
Also find out what level the child psychologists are trained to (1-4, 4 being good). Most in CAHMS are apparently trained to level 2. Not enough for complicated kids.
Also, CAMHS follows NICE guidelines, which means that they follow care pathways for distinct diagnoses. That's fine but many adopted kids have an overlapping jumble of issues (trauma, attachment, sensory integration), and so the separate treatment pathways may not actually help the whole (and complex) child.
Finally, find out if you can participate in all Snooz's session (particularly important if you suspect that attachment issues are part of the mix).
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Post by sooz on Aug 14, 2014 19:31:26 GMT
Thanks.
Well he went in by himself for an hour. Asked for some feedback when he returned, as suspected it's not clear cut, some definite traits and other areas none.
Next step Coventry grid!!
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Post by Deleted on Aug 14, 2014 20:10:52 GMT
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Post by donatella on Aug 14, 2014 21:12:54 GMT
Hmm. Clearly trying the old adoption = attachment stuff. Do it first. Get your ducks in a row.
Thing is regardless whether it is attachment, ASD, or ASD look alike .. The ASD dx is the one that's most helpful.
CAMHS panel couldn't agree on a dx for DS. I had to fight and argue. One to one with the consultant psych. And eventually he agreed to dx on a looks like basis. He took over his care for everything and even now expresses his doubts over dx but is prepared to be pragmatic and be beaten over the head by me! He's lovely!!
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Post by sooz on Aug 14, 2014 21:32:33 GMT
I've read that before, just re read it.
He has most definite asd traits in some sections. He has most definite attachment traits in other sections. Doesn't really fit either in other sections.
Seems slightly leaning towards attachment if you add it all up, but I couldn't really say one is more clear cut than the other.
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Post by sooz on Aug 14, 2014 22:38:34 GMT
I think my problem is I've got so adept at handling snooz I don't know what he'd be like if I treated him 'normally', if that makes sense?
So, I could say that actually he copes with change quite well, but that's probably because I preempt everything and automatically modify or explain without thinking about it. I'm really not sure I'm the best person to answer these questions because I have no alternative view. I have no other child, no alternative experiences, this is my 'normal'.
I don't know how else to be with him.
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Post by donatella on Aug 14, 2014 22:48:28 GMT
DS's consultant has this thing about eye contact.
Says he makes eye contact therefore can't be ASD. Utter nonsense. DS looks over your head, shoulders. Can make fleeting eye contact but quite shifty.
DD looks right at you -except actually she's looking through you.
It's a spectrum. They're all different. Very narrow DX criteria for very wide spectrum.
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Post by sockthing on Aug 15, 2014 11:32:27 GMT
Sooz - oh it all sounds EXACTLY what I feel about kipper! He doesn't fit any one dx. Is more of a medley!!
As you know, this is something I am struggling with myself. I also totally understand what you mean about having unknowingly adapted your parenting. DH and I were saying the same thing the other day. Every now and then I get a bizarre glimpse outside of ourselves if you know what I mean and realise how we have implemented so many strategies and so on to keep things running smoothly. If a paediatrician asked does he fall asleep ok, I would probably unthinkingly say yes - but in reality he falls asleep in our bed, with both of us sitting with him. That's not normal parenting! Even nursery do it - they've been so happy with his progress, but in reality they have unofficially, gradually implemented 1:1 with him. I suspect it was Kipper engineering it by just being THERE in your face all the time...that's what he does. That's not normal either.
It's because of this that we have realised we will not adopt again. It wouldn't be fair on anyone.
I've digressed but sending you much empathy!
The Coventry grid is quite old now isn't it? I've often wondered what follow up they have or haven't done.
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Post by donatella on Aug 15, 2014 12:56:40 GMT
My question to psych was what would you be diagnosing if they weren't adopted but birth children? I'm not dismissing attachment stuff in any way - it's definitely in the mix for ds, along with poss Fae - but given that the behaviours are so similar they're what they should be diagnosing. Not their status.
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Post by larsti on Aug 18, 2014 21:31:42 GMT
I know exactly what you mean sooz and sockthing about adapting your parenting. I think its instinctive and then you can't see the wood for the trees IYKWIM When we saw FASD Dr there was one point when both the doctor and DH were saying to me (apropos of some question I have forgotten it was so long ago!) Dash DOES struggle with X. The only reason he doesn't struggle is because he is home educated so doesn't have to cope with X. His environment is totally adapted to him. Well of course I understand that concept, that's why we home ed! But whatever the question was, my answer was wrong!! So if we all pretended that our children could function 'normally' and treated them that way, then we would see the full extent of their difficulties. Is that what profs want??
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Post by wibbley on Aug 18, 2014 21:45:52 GMT
I agree. We live our life in a way that suits the kids. Not because we are a soft touch, but because life would be hellish if we didn't. After a while it becomes your normal & you forget the ease of 'normal' parenting.
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Post by pluto on Aug 18, 2014 22:31:57 GMT
Look at the list of symptomes what make a child autistic, than write down examples what your child does for every symptome, 2 or 3 examples for every symptome. If there is a symptome what the child absolute not has than leave it. After this you have a strong list with observations why you think the child fit in the asd bracket.
www.cdc.gov/ncbddd/autism/signs.html
example for my child: -•Gives unrelated answers to questions, this is what I could write about it (obviously leave the symptome out of the list with observations):
When X comes out of school I ask him what HE has done in school, than he starts talking about mr.Bean and the car what got crushed in the school where the open day was.
Today I had a meeting in school and the teacher asked him which subject he wanted to do, he started talking about the holiday and that he was in London this summer.
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Post by sooz on Aug 19, 2014 13:35:57 GMT
Ok, will try a bit of copy and pasting, will write yes against those he shows traits and no against traits he doesn't have....
Possible "Red Flags"
A person with ASD might:
Not respond to their name by 12 months of age - NO Not point at objects to show interest (point at an airplane flying over) by 14 months - NO Not play "pretend" games (pretend to "feed" a doll) by 18 months. - NO Avoid eye contact and want to be alone. - YES Have trouble understanding other people's feelings or talking about their own feelings. - YES Have delayed speech and language skills. - YES Repeat words or phrases over and over (echolalia). - YES Give unrelated answers to questions YES Get upset by minor changes. - YES Have obsessive interests. - YES Flap their hands, rock their body, or spin in circles. - NO Have unusual reactions to the way things sound, smell, taste, look, or feel. -YES
Social Skills
Social issues are one of the most common symptoms in all of the types of ASD. People with an ASD do not have just social "difficulties" like shyness. The social issues they have cause serious problems in everyday life.
Examples of social issues related to ASD:
Does not respond to name by 12 months of age. - NO Avoids eye-contact. - YES (but ok with me) Prefers to play alone. - YES/NO Does not share interests with others. - YES Only interacts to achieve a desired goal. -NO Has flat or inappropriate facial expressions. - NO Does not understand personal space boundaries. - YES Avoids or resists physical contact. - YES ( if he doesn't know person very well) Is not comforted by others during distress. - YES (only wants mummy) Has trouble understanding other people's feelings or talking about own feelings. - YES
Communication
Each person with ASD has different communication skills. Some people can speak well. Others can’t speak at all or only very little. About 40% of children with an ASD do not talk at all. About 25%–30% of children with ASD have some words at 12 to 18 months of age and then lose them. Others might speak, but not until later in childhood.
Examples of communication issues related to ASD:
Delayed speech and language skills. - YES Repeats words or phrases over and over (echolalia) - YES Reverses pronouns (e.g., says "you" instead of "I"). - NO Gives unrelated answers to questions. - YES Does not point or respond to pointing. - NO Uses few or no gestures (e.g., does not wave goodbye). - NO Talks in a flat, robot-like, or sing-song voice. - YES/NO Does not pretend in play (e.g., does not pretend to "feed" a doll). - NO Does not understand jokes, sarcasm, or teasing. - NO
Unusual Interests and Behaviors
Many people with ASD have unusual interest or behaviors.
Examples of unusual interests and behaviors related to ASD:
Lines up toys or other objects. - NO Plays with toys the same way every time. - NO Likes parts of objects (e.g., wheels). - NO Is very organized. - NO Gets upset by minor changes. - YES Has obsessive interests. - YES Has to follow certain routines. - YES Flaps hands, rocks body, or spins self in circles. - NO
Other Symptoms
Some people with ASD have other symptoms. These might include:
Hyperactivity (very active). - NO Impulsivity (acting without thinking). - NO Short attention span YES Aggression. - YES Causing self injury. - NO Temper tantrums. - YES (but rare) Unusual eating and sleeping habits. - YES Unusual mood or emotional reactions. - YES Lack of fear or more fear than expected. - YES Unusual reactions to the way things sound, smell, taste, look, or feel. - YES
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Post by pluto on Aug 19, 2014 14:34:38 GMT
This list is pretty impressive! Then you give real life examples how you notice those, how he reacts.
Also read again through the 'no's' and think it through a bit deeper, likely some of the no's might be there as first answer but if you think it through it might not be so sure. Look at his play, compair it to play of neurotypical children, is there a 'weird' element? There might be things he did do indeed but you learned him to change, for example did you have to talk very clearly to him when he was little in order to get a reaction? Did you say his name with a bit of sharpness? Did you play a lot with him and taught him to play? etc, etc.
We get so used to our children, and you had him from a very young age, so he has had a lot of positive interaction also (early intervention).
I think you could write a strong report about his behaviours, write objectively without emotional involvement, just observations.
That is good to do as you than have a reference to look back on in say 5 years time.
Also good when you have to work with professionals who might see you as an overly concerned parent (for them a truth until proven different I guess), or ask for examples who are always difficult to give if a situation is tense.
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Post by sooz on Aug 19, 2014 15:07:27 GMT
I will have a good think....
You see SOMETIMES he's incredibly outgoing, will chat to people, ask them how they are, did they have a nice Xmas etc.... But he can be asking the same people that in February! So I think that is learned.
He'll hold the door open for people, say 'ladies first' with a big smile, he interacts well with little ones, soft voice, head on side, bend down to their level, reassure them. I've had adults approach me quite often to say what a lovely, friendly, caring child I have. Have also had the other side when he's lashed out!
Now, play......it's very varied, his imagination is fantastic, loves dressing up, pretend play is very diverse, he will make something out of anything and everything, plays alone happily but prefers someone to play with (his terms though, he needs to control the other person and direct the play)
He can be very expressive, laughs a lot, can be teased, will share anything with me, give me his last sweet but has trouble sharing and taking turns in general.
Loves hugs, strokes, massage, will stare into my eyes nose to nose.
Some days he presents as a perfectly 'normal' child, you'd be hard pressed to spot any quirks, another day he's closed off, unresponsive, confused, anxious.
Environment and tiredness has a huge impact on how he is....
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Post by Deleted on Aug 19, 2014 17:03:21 GMT
My only experience of ASD dx process was with my 10 year old BS and I seem to remember he was a yes for all but one question (has an interest in sticks and stones, which he didn't) and they told me at the time he was a black and white case.
AD is much more complicated to "put in a box" partly because I need to use guess work about some of her history and partly because like so many adopted children, she seems to change a lot and go up and down and round in circles.
With BC there is no, or limited trauma, so it's much easier to get a clearer picture and you can give so much more information. With DS they went into so much detail about my pregnancy and labour. Hours worth of information. I don't have much of that for AD.
I also agree that we adapt so much we miss stuff .. I have become so used to working around DS that when I suddenly had to tell him to get in the car as his sister was having an asthma attack and needed to go to hospital, I was absolutely horrified when he kicked off. I guess I had forgotten what it's like to spring stuff on him and had somehow subconsciously assumed he would see why her health was the most important thing at that moment .. And of course, he couldn't. Because his brain is still the same!
I hope the picture becomes a little clearer soon x
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Post by donatella on Aug 19, 2014 17:05:01 GMT
DS is very expressive. You can tell what's going through his head by looking at his face. Still ASD!
DD - I'd never noticed her flapping until an Ed Psych did. She does it mainly when I'm doing her hair. If I'm drying it she flaps, twirls, twiddles, hums, nods her head. Not so much at other times.
She's not particularly impulsive, although runs off a lot. More sensory seeking than impulsivity. Not hyperactive. DS is but he's also ADHD.
Eye contact? - This one bugs me. Ds's psych always goes on about it. Both can make eye contact. She looks through you, he makes fleeting contact but often looks over your head or shoulders.
Pretend games. Him - Yes. Her - No.
Recognizing name? Think they both did.
Causing self injury. Him - No. Her- Yes ,but sensory seeking - picking her skin, face, scabs.
Giving unrelated answers. Both to a degree. DS extremely pedantic. Won't use 1 word when 101 will do. The answer in there somewhere but you have to dig around. DD a blxxdy nightmare with this. But see theory of mind/mindblindness. She assumes you must be thinking along the same lines as her! Can't imagine that you're thinking something different. Copious quantities of utter drivel!!
You say he can be extremely outgoing. So can DD. DS not. But DD does it inappropriately. Copies me. What I say and do. Okay for a grown up. Not for an 8 year old. Not necessarily authentic, mimicking. Not understanding adult/child hierarchy.
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Post by sockthing on Aug 19, 2014 17:25:13 GMT
Sooz, you have every sympathy re the complexity of the picture. My answers would look just as mixed as yours but possibly in different places.
Oaty - very very interesting to read of your different experiences with DS and AD. Helpful and comforting in that I feel validated for finding the experience of dx so confusing - and distressing.
The more I read - the boards, books about attachment, developmental trauma, FASD, ASD, SPD, ADHD - the more I lose faith that anyone can ever be confident of a "true" diagnosis for our complicated children. Our best chance is in a holistic approach from a multidisciplinary specialist team like Family Futures.
My my difficulty with ASD is that it almost seems "anything goes" - you're unempathic : you're ASD, you're too empathic : you're ASD. Fear of change ? ASD ( but wouldn't you have a fear of change if you'd abruptly lost everything and anyone you ever knew?).
He's imaginative? "Oh but he's not *socially* imaginative...." There's an answer to everything. I'm not sure the experts really agree on all the indicators and how to interpret them. I think they are way too quick to assume, because they are keen for early intervention, which I understand. But how can a child be dx "a classics teaching case of Aspergers" in 10 minutes, and then 3 appointments later be "only" Social Communicatiin Difficulties? (Our experience).
Personally, I reckon that in 10, 15, 20, years, Developmental Trauma, and Attachment Disorder will be sub-categorised under the umbrella of "An Autistic Spectrum Disorder". Which would make a whole lot of sense and save parents an awful lot of questioning, and fighting and emotional confusion - it would mean a more accurate dx but still with the support that ASD dx brings.
I am am aware that this has turned into a rant (Sorry Sooz), and I am also aware that I have much to learn about ASD in general. But this is how I feel in the here and now. Maybe in 5 years I will say something differently.
Sorry if I've hijacked.
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Post by sooz on Aug 19, 2014 18:19:22 GMT
Rant away Sockthing, it's so frustrating and confusing we need to put it down in print sometimes!
I have seen snooz flap, but it's very rare and then only just as he's falling asleep, waggling fingers infront of his eyes......a newish development!
And then there are the tics, we have vocal clicking noises right now, followed by hmmm, and then the word 'ok' .
He's not very coordinated either, bit of an odd gait,.
Bless him, a lot to contend with!!
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Post by pluto on Aug 20, 2014 18:12:24 GMT
Waggling fingers infront of his eyes, a stick collection, vocal clicking noises, bit of an odd gait, very rarely answers a question,.........
Sooz write all those behaviours down, that is what the dr. needs to know.
You might think a stick collection is funny, but it is important, all those things that are a bit funny but not per definition a symptom are important also to get the full picture. Describe also how he moves, what he can (swim, cycle etc), how he eats (holding cutlery correctly, what he likes and dislikes), how he plays (look up what is 'normal play' for 8 year olds, compare against that. How he interacts with friends, does he has a friend (not the child of your friend, one he has chosen himself) etc. Show some drawings he has done, show his handwriting, have pictures of his handywork (not things adults in school have made for him lol). What are his obsessions? How is he sleeping, or not? Are they changing or have been there for ages? Can you video some of the odd behaviours, verbal tics, motor tics?
You have to deal with all those behaviours, this is definitely not mainstream or normal. I hate it when people tell me 'all children do that', yes the only tiny problem is that my child does not stop, needs huge intervention to change the behaviour, does it obsessively, will still do it 5 years from now.
Sockthing; But how can a child be dx "a classics teaching case of Aspergers" in 10 minutes, and then 3 appointments later be "only" Social Communicatiin Difficulties? (Our experience).
You are right this is nonsense, a diagnosis comes after 2 full days of assessments, assessments in every area of life and you should get a report (both my kids were 40+ pages) with all the results (youngest does not have ASD). I advise you also to write down objectively every behaviour using the ASD list as guideline. You have to present a case, when they ask questions you have to give decisive answers, it is so easy to forget things when you are a bit nervous or play behaviours down. Even if behaviours are there not all the time, they are often there for a reason and should not be ignored.
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Post by sooz on Sept 16, 2014 14:10:15 GMT
Ok, hour and a half on Coventry grid questions yesterday. Awaiting feedback once psychologist has collated all info from ados and school observation, but......she said based on what I answered to her questions she'd pretty much say autism was most likely.
I might even have a dx by end of next week!
If it's not definitive then he'll see psychiatrist next for another assessment.
We might be getting somewhere!
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Post by donatella on Sept 16, 2014 17:22:42 GMT
It's a bit scary just how many of our kids are going on to be dx ASD! After years of being told attachment.
Given that's it's genetic, why did no-one ever think of it in BP's??
Sorry sooz, but if snooz has to have a dx this is a 'good' one to have!
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Post by sooz on Sept 17, 2014 14:36:41 GMT
CELF assessment. - (Clinical Evaluation of Language Fundamentals) - Result .... 0.2%!
No wonder communication is hard!!
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Post by sooz on Sept 17, 2014 17:26:17 GMT
To be fair, at home I think we get better receptive and expressive language from him than at school and in a 'test' situation, but the report will be very useful in getting him more support and understanding.
Bless him, he's functioning at age 4 in some areas.
Still waiting for dyslexia assessment as ed psych didn't want to overload him by doing both on the same day, which I think is very sensible.
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Post by wibbley on Sept 17, 2014 17:54:39 GMT
I suspect my DS would score terribly too. Quite frankly, often I think my DS is completely crackers. He does and says the strangest things. I love him, he makes me laugh quite a lot, but something isn't quite right. And I say this with full awareness of the ASD spectrum and the odd-ball stuff they do. My DS still tops it!
When he is older I do need to get some very thorough cognitive assessments done, but right now, he has time to grow and develop some more before we attempt any of that.
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