Worried ASD Assessment gone wrong

A good result, you can both move forward with a bit more certainty now.

Hi Martin, just an update, my son was finally diagnosed this week with high functioning autism.  I am so relieved to finally have an answer.  He seems somewhat relieved aswell.  Thank you for your support.

Thanks for sharing your experience.  I'm  glad you finally got the correct diagnoses for your daughter. 

There is certainly a lack of funding for this and mental health in general and I think it's about time it was made a real priority.

Thanks again.

My daughters was quite different. We had an appointment of about 3 hours, where we talked together, then we were split up while she answered questions and done the standard tests (story telling, toothbrushing etc) and I did the parental interview.

The second appointment was much the same, questionnaires but without tasks, and we were split up and asked questions separately, for about 1.5 hours.

I think it should be a longer, more thorough process. It isn’t enough to gauge an individual unless they present very obviously and stereotypically.

(The last appointment was just to tell us they didn’t think she had Autism, and we were given her report. The whole thing was less than ideal, and the report was laughable.)

My daughter masked all the way through the first two meetings, and not the last one. I think they were shocked at the change in her, and still they had to say she didn’t have anything wrong with her. You could see the shame on their faces. I do think it was a case of lack of funding for yet another child…..

I ended up paying for a private assessment, and the process was very  thorough. She came away with a diagnosis of Autism, ADHD and Dyspraxia. She was tested for Dyscalculia and was 1 point away from qualifying. 

You are welcome. I hope the diagnosis process is beneficial for your son.

Thank you.

Thank you Catlover,  what you have said has helped me a great deal.

His Cricket is very much a special interest but my thinking was that as he picked it up from his dad when he was very young, that it may not be counted. I think I need to tell them that he counts down the days to the season and will get more and more excited about playing, so much so he will make odd noises and faces.  He also gets so disappointed if it's been called off.  He also keeps track on the local leagues and finds out about famous players and watches clips on YouTube and on TV alot.

He is also an avid gamer, to the point of being addicted I would say. I am a bit worried about telling them this as I don't want them to think I just let him do what he wants in the house but it's not as easy as that because he doesn't socialise and his only friends are on there - so I'm  guessing he finds messaging and gaming a lot easier to deal with.

I already have alot written down regarding his difficulties as I find it difficult myself to verbally explain things.  

Do you know what the second appointment entails by any chance?  I find it hard to believe it only takes 3 hours in total.

Thank you so much for your help.

Hello,

I'm sure that his communication difficulties will be noticed, if people have such difficulties it won't be expected that they will be able to describe them in great detail. I'm afraid I didn't have any interaction with an occupational therapist, my diagnostic assessment was rather different, with a psychiatrist.

• Hi Caelus, thank you for replying. 

I think you are right, he probably would find typing something out much easier but he still struggles with putting his thoughts across.

The nurse didn't ask him to expand on his answers and I'm probably overthinking that by him giving short answers, and me saying he had a few more difficulties in the areas she asked about, they will think there are discrepancies.   

I wish I didn't think like this, I always go over everything in my head and make myself ill.

Thanks again for your advice and help.

Hello, Martin, 

He was nervous but manged surprisingly well I thought.

Due to his word finding and processing difficulties, he already struggles to express himself and understand language.  The problem is, I know this is not the only struggle he has with communication; I can see he doesn't get the subtleties of language which cause a lot of issues for him.  He doesn't see this himself so wouldn't tell someone.  I'm having trouble explaining it myself and I just hope they see this.

You don't happen to know what the Occupational Therapist will do in the assessment do you? 

Thank you for your help.

Hi, thank you for your reply.  Yes, my son will only answer exactly what he has been asked, he wouldn't normally elaborate unless he was then asked to do so.  I hope they understand this.  Thank you.

Try not to worry too much. It’s not unusual for someone to mask during such meetings. What I will say is, when they ask questions, they are looking at responses as well as what is being said. An overly long and detailed answer is as telling as a one word answer, and anyone who knows what they are doing would see this. 
Why don’t you prepare a list of things that your son does now that they can read after meeting with him at the next appointment? Make notes on things in his childhood. They don’t have to be ASD related. 

With reference to a special interest, it could be anything, and could have come from anywhere. A parent, a TV show. A book…. Don’t worry about it. If I said mine include horror, card making or jewellery making you wouldn’t think anything of it because they seem normal and you don’t know the specifics.

Make them aware how much time your son dedicates to these interests, and for how many years. Specify that he’s interested in nothing else, and how his focus cannot be shifted when he’s fixated on them.

These children need us to be their voice to help get the true story story across. Everything you’ve said in your message makes his position very clear.

thing is, if he struggles with language and what to say, hes not gonna go indepth and explain anyway right? he will give one word responses as is the norm, and if the assessors knew what they was doing theyd expect one word responses as the norm for any social based impairment.

if perhaps they allowed him another form of communication to explain he may do better, like me for example, i do one word responses, but if you gave me a keyboard and allowed me to type my responses you wouldnt have enough word limit for me due to how detailed and much i could write in text form. verbal interviews are pretty bad if they expect a full response and detail out of a person with a social based impairment.

Hello, I understand that you are worried that your son may not be formally diagnosed as autistic, but clinicians should be aware of how all autistic people present differently. Also you say he didn’t behave as he usually would, he could have been masking if he didn’t feel safe enough. Professionals should understand masking, so hopefully that will influence the diagnosis.

Catlady31 said:

He didn't really give any indepth answers so I felt like he wasn't explaining what I see and the struggles he has everyday and how it affects him.

With regards to this comment, your son probably will not elaborate on answers unless explicitly asked to do so. We as autistic people are literal communicators, so unless you say what you mean you will not get the answers you are looking for. This response is typical of us as autistic people, hopefully the professional recognise this. 

Also, the assessment shouldn’t only be reflective of  how he presents in the clinician’s room, it should take into consideration what being autistic means for him in everyday life. If the clinician understands the complexity of autistic experience then he should still receive a formal diagnosis.

 I hope this helps.

If all the traits you mention are recorded in the questionnaires then these will be taken into account. The clinicians, if they are competent, will assess the written material fairly, they are not going to disbelieve you; also they should not discount the written evidence just on the grounds of how your son presented on the day of the interview. Being able to sit still is not impossible for most autistics when they are in public, giving monosyllabic answers to questions when anxious, and no doubt your son was anxious, is a quite normal reaction for autistics.