Borderline ADOS score of 9

Hi, I've just whipped my own diagnostic report out of the drawer to answer this. The cut off for Autism is 10 but the cut off for Autism Spectrum Disorder (Aspergers) is 7. I can't imagine that it would vary too much by diagnostic system. I was diagnosed according to the ICD-10 though, do you know what system they are using to assess your son?

Thanks for your reply,

I haven’t got the official report in writing yet but she didn’t mention the 2 cut offs - only the one. When were you diagnosed? I’m finding a lot of older posts that mention the 7 cut off for Autism but nothing of recent.

I don’t know if it’s something to with recent and upcoming changes to the main diagnostic manuals, that 'autism spectrum disorder' (ASD) is now likely to become the most commonly given diagnostic term. 

She said she has known someone who’s not scored on the ADOS to get a diagnosis but only when they’re older. 

Thanks for your reply,

I haven’t got the official report in writing yet but she didn’t mention the 2 cut offs - only the one. When were you diagnosed? I’m finding a lot of older posts that mention the 7 cut off for Autism but nothing of recent.

I don’t know if it’s something to with recent and upcoming changes to the main diagnostic manuals, that 'autism spectrum disorder' (ASD) is now likely to become the most commonly given diagnostic term. 

She said she has known someone who’s not scored on the ADOS to get a diagnosis but only when they’re older. 

Good morning, thank you for your comment - yesterday I was emotionally exhausted so I gave a very brief account of my son’s issues, but you are right, there are a lot of similarities between him and your daughter. I feel better reading this that you have noted them as traits because when I try to explain all this to health professionals they don’t really take me on!

My son very similar and says ‘oh no’ quite a lot; he said it quite a lot throughout his ADOS but she noted that it wasn’t aimed at anyone or any situation she felt like he was just saying it in general , difficult again as sometimes he says it in context (when he drops something) but sometimes repeats it when nothing happened to justify an ‘oh no’. The only person’s name he will say is his older cousin which is Tyler and it comes out ‘Lyler’. Never says Mama or Daddy. Some times repeats ma ma ma ma ma ma ma but I don’t feel he saying the word Mama. When the therapists come he can sometimes say a word so he gave ‘bubbles’ a good go, but then when they leave even if I do the same he will not cooperate. It’s like he will push himself to get the bubbles but with me he won’t. He is a sensory eater, everything is smooth consistency he does not tolerate even the slightest of lump or texture, screams and thrashes if there is an accidental lump in there. He will eat chocolate yoghurts but not choc mousse because the texture is different. He’s quite brand specific as well so will eat Paw patrol strawberry yoghurt but not petite filous strawberry yoghurt.

He eats: chicken & squash puree

carot and cauliflower puree

Fruit cocktail puree

Paw patrol strawberry yoghurt

Nesquick choc yoghurt

Ambrosia chocolate desert

Never entertains solids, likes to take food off our plate but to group in a bowl, never puts to mouth. He never went through a stage of putting toys in his mouth and didn’t entertain teethers. Even now younger sibling is on solids, biscuits etc he has a look but walks away. He won’t feed himself. Still spoon fed by me. He is also attached to a certain bowl and spoon.

My son also gets thrown if something is different. Like you explained about your daughter and the tots group, my son attended a group at our local clinic for 4 weeks and last week we had to go back to same clinic but to a different department for a hearing test, we walked past the door for the group and he got increasingly upset on realising that’s not where we were going, he threw himself on the floor and he was that distresses they couldn’t carry out the hearing test. Same with shopping, I usually do self scan so pack as I go along and he can tolerate that, recently the self scanners were down so I had to go to the checkout and my son lost it at the checkout and was thrashing that much he actually bruised himself. Obviously he doesn’t speak so this is all guess work but I feel like it was the change, and before the melt down he was pointing towards the self scan section.

This can go down to the colour of the bath towel he uses, or following a certain routine (he has to take his winter coat everywhere because thats what we did first and even on a hot day I say to leave it he is not willing to go without it)

My son is also very set in his ways. There is no telling, reasoning, explaining to him if he is going to do it he will, he will do the same even if he has been told off, he doesn’t seem to understand but I have professionals telling me thats just his age? At home play is repetitive and spends most of the time lining cars up, he will line them up in one direction and then another, and then he will move them onto a different surface and then do the same. He will come to us only if he needs something, for example the car is broken or he can’t get the last car out of the bag.

My son doesn’t play with other children but as you said will do what the therapist says if they are serving a purpose. We have regular therapist appointments and they are always the same, big bag full of toys and Haris main goal is to empty it. It’s almost like he is compelled to empty things. Drawers, bags, toy box he will empty but not play with anything he takes out. Because they only let him take one thing out at a time, he complies with what they want and will give them a fleeting eye glance because he knows thats when he gets another toy out. They say that because he is doing that glance, he is communicating which is leading towards not being Autistic but that absolutely baffles me because surely the fact he needs motivation and sabotage to force him to look at you means there are traits?? ADOS yesterday followed a similar pattern and  at first he refused to do anything she asked but she kept the bag of toys so its like realised what she wanted. He went back, did everything she did and then went straight back to the bag of toys and a low and behold she gave him more. He will bring me something he if wants something switched on but then go to play alone. The people as objects part really helped me because I feel my son is the same. He doesn’t want to cuddle or kiss but he will climb / stand on me. He climbs all over me constantly. He throws himself at me, I am probably bruised daily from some form of kick or headbut but not maliciously. If he decides to lie on the couch and you are in his leg space he will push you with his legs until you move. The thing is most of this he does continuously at home but then when the therapist comes with her bag of toys he is distracted and they don’t see it. It’s like he almost knows what is expected of him. Its the same with Nursery, he copies other children’s actions. When he walks in he will wave whether there is someone there or not. It’s like he sees the actions, and does them because he thinks thats whats normal.

Haris stims with a blanket he will flap it in numerous different ways but I didn’t give him this blanket in the ADOS and with him distracted there was no hand flapping so she has noted down no stimming.

Haris can hair pull and he likes to pull glasses off. He will also burst into laughter at random times. I do wonder if Haris has reduced sensitivity to pain, he is forever falling over and bumping his head but never bothers. It’s like he has no spacial awareness, he falls into everything and even falls over nothing.

Haris will point to what he wants when motivated but otherwise will not communicate his needs.

Therapist noted down yesterday that facial expressions were limited.

Cuddles and kisses have to be on his own terms, and if he does kiss it’s more us giving him a kiss he just bows his head to the floor and lets us kiss him. As a baby I didn’t really have concerns but looking back (and now having my second baby, she is interested in everything and interacts a lot more with a lot more facial expression) he was very blank and not bothered about anything. We thought it was just because he was premature and still baby like. He has never been clingy or cuddly. Pushes me away, and will go with literally anybody if they serve a purpose. He never cried for his mama or needed consoling.

I have tried to call but am not getting anywhere, feel so helpless and like this means no diagnosis for now and more waiting. He seems to throw people because of how different he can be. And seems to be great at masking until he gets home where all this behaviour comes out. They threw us onto the path way 12 months ago and I don’t know why they do early intervention if all we are going to get told is to wait more and wait more. We have months between each appointment and will probably wait months for a review meeting and it’s so draining on all of us. I get told constantly it is a spectrum and every one is different but it seems that because he’s not severely Autistic and is not refusing to interact then it doesn’t qualify for a diagnosis at this point.

Sorry for the length and once again thank you for listening and the input x

Thank you for explaining. So, just to compare notes, I will be in depth so I apologise in advance if I go on for ages, but it is for educational purposes so you can see if there are similarities and just in case it jogs your memory about something that your son does that you hadn't realised was an autistic trait. 

My daughter, as I stated above is pre-verbal, although she does say oh dear quite consistently if something she is doing goes wrong and she does occasionally say mummy or daddy. She is a massive sensory eater, food has to be bland or sweet and dry, the only two exceptions are home made soup and yoghurt. She would eat chocolate cake but not chocolate gateau because the texture is wrong for her. She still eats with her hands so how food feels in her hands is very important for her. She's not too fussed about where she eats but we do try to get her to sit at the table, though she likes to climb on top of it! She would only eat out of one particular bowl but we've made progress with that and she will now eat meals at nursery from other bowls/plates. My daughter gets thrown if we go somewhere different and can become quite clingy but she gets very attached to places that she is used to, such as the SEN and Autism tots group and would get very upset if we went to the building but didn't go in. She has VERY good memory! She's very fixed too, if she has got it in her head that she is going to do something then you can't divert her. If it is something dangerous then the only option is to physically remover her from it, usually kicking and screaming, and to physically keep her from it, because she will remember, and hours later will still try to go back to it if the chance arises! Play is likewise very repetitive. She likes to organise her toy farm animals into groups, usually into groups of the same animal but the other day she made two groups one of mammals and one of. She gets very upset if she can't get the animals to stand up and will give it to an adult to resolve! She also likes stacking wooden shapes very precisely and duplo too, again she gets very upset if it falls over! She can play with someone but only if they are serving some purpose for her, such as if they are passing her the farm animals or other toy that she wants or she will bring me a battery operated toy if she wants me to switch it on for her. She sees people as objects, she will climb over you if she wants to get something that is the other side of you and if you are unfortunate enough to be sitting on an office chair then it is going to get spun around with you on it, she has done this to a fair few professionals, while they've been trying  to assess her! Luckily they've been quite good humoured about it! Did I mention that she likes spinning things? And she stims loads. She sits and shakes her head for anything up to half an hour. She does head inversions. She does headstands, she's good at them too, she stays upside down for quite some time, like a bat, usually while laughing hysterically. The reason that she does these things is to stimulate her vestibular system. She also hair pulls, unfortunately! Inappropriate laughing is another thing. Another child may hurt themselves and cry, she will laugh at them, she doesn't mean to be mean, she just doesn't understand that they are crying because they are hurt. She doesn't 'get' the cues that other people give if they are in pain, so if she pinches me and I scream, she will not stop pinching because she can not read my cues. She also has reduced sensitivity to pain herself, she has grabbed hold of brambles before and not so much as flinched, I had to prise her hand off of them!

My daughter does not point or wave or any of that. If she wants a drink then she will give me her beaker or if that isn't around she will go for my cup of coffee. Her ability to communicate is extremely limited. SALT can't do anything until she is 3 either, so ridiculous! She doesn't really 'do' eye contact, occasionally she will give fleeting eye contact but it is always very brief. She doesn't really do facial expressions either. Although she will laugh if she thinks that something is funny other than that her face is blank, there's no animation there, nothing. She's not quite as 'tactile defensive' as she used to be and will come to me for cuddles, on her terms though, I can still get pushed away if I approach her when she doesn't want to be cuddled. As a newborn she would cry to be put down, she's my 3rd daughter, so I knew this was odd straight away. Up to a year ago when she was 18 months, I was the only person that she would allow to pick her up and then only if it served a purpose to her. If I picked her up and put her on my lap she would just climb straight off again or if I tried to cuddle her she would push me away. 

I hope that this account helps in some way. It's scary when your child has a delay and you don't yet have a reason why. Good luck with your phone call tomorrow. Please let me know how it goes.

Greater Manchester.

So main issues atm are pre verbal, extremely restrictive around eating (eats only 5 foods, all of exact same smooth consistency (yoghurt like) ) restrictive around routine of eating, has to eat at home in certain room with certain youtube video on (will not eat elsewhere or without). Restrictive around general routine, gets increasingly upset if something unexpected happens. At home with us very repetitive in play - never bothers with anything in the toy box or what his siblings are doing, just likes to line up and transport his toy cars.

Social communication is hit and miss, he has days where he will not communicate his needs and days where he will point if he wants something. He has days where he refuses to interact with therapist and just lines up his cars in the corner and then days where he will have a good go at interacting. It’s like he wants their toys / bubbles and will push himself to get them. Eye contact is limited but again if they sabotage him he will fleetingly look to get what he wants. Will not make any eye contact when eating or if you kiss him. 

Today was a good day and he copied most of what she did. Made eye contact when wanted more bubbles. Wouldn’t make eye contact when he pointed to something he wanted. 

Everyone seems to be baffled xx

You're welcome. I know what it's like as a parent having your child go through the diagnosis process as well as being autistic myself. 

I didn't realise that your son is also pre-verbal (my daughter is too). BUT according to the new system, ASD is ASD. It is a spectrum condition. People can have more of some symptoms and less of other symptoms. I'm surprised if he is pre-verbal that his score was only 9. How is his 'social communication' eg eye contact; gestures such as pointing or waving; responding to his name; comfort around being cuddled; reciprocal play; pretend play; etc.

They might be trying to work out if he has Autism or another disorder that is affecting his language development.

I'm glad that you're going to phone them tomorrow. Maybe write down a list of points first that you wish to seek clarification on so that you don't miss anything or get caught out?

I'm in North Essex. You?

Thanks very much for the support - you are obviously a lot more clued up than I am so I appreciate the input. My son is just under 3 and no language yet so I think it was module 1 (all play based, no language involved). 

I will try to speak to them tomorrow and see what she says about the 7 figure, and also exactly what diagnostic manuak they are using. I did think the same if they’ve put it to 10 then how many they are missing out on. But if they were thinking aspergers they would be expecting language from my son? 

Where abouts in the UK are you? 

I was diagnosed on the 12th December 2018. My 2 year old daughter was also diagnosed last Wednesday. So I'm familiar with both the Adult and Child diagnostic process.

I can't imagine that the Manual that is used would affect the cut off score for the ADOS. In my mind, with the diagnosis changing from Aspergers/Autism to a universal one of Autism Spectrum Disorder, there would just be a single cut off of 7 for ASD. It wouldn't make any sense to raise the cut off to 10 for ASD as then they would miss a lot of people who would have been diagnosed with Aspergers under the old system. 

Do you know what schedule of the ADOS your son did? I did schedule 4 and my 2 year old did schedule 1. I don't yet have her full diagnostic report to see if the cut off scores differ by schedule used. When I do have it, I will post here to let you know if it is the same or different cut off.

Please see these links for further information on the ADOS and the different schedules, the second article is rather long but very comprehensive and detailed, it appears to suggest that the cut off scores are the same regardless of the module administered, table 3 shows the cut off scores for module 1 (The same as for module 4):

https://en.wikipedia.org/wiki/Autism_Diagnostic_Observation_Schedule

https://pdfs.semanticscholar.org/51d7/228b4d4c2e5e790e8f77b95d2df23e97e952.pdf

Maybe phone the assessor and question them? What are they talking about?