Don't feel ASD assessment went well :(

[pinkpolkadot]

Well DD1 had her initial ASD assessment today but I can't help thinking I didn't do very well.

I went on my own with her, the baby has chicken pox so DH had to stay home with her in the end. I just feel like I didn't get opportunity to tell her loads of the stuff I should have or stress to what extent these issues are affecting DD.

The Dr was very focused on a few areas such as social skills and speech and did not seem interested to hear about other concerns which I feel are affecting DDs life far more (such as sensory issues), but I now feel I should have spoken up more

I did leave a list of concerns we have with her but not sure if she will read it and it is hard to express the severity of each issue in a list, especially when a lot of the stuff can also be normal for her age to some extent.

During the appointment she did pick up that DD is very hard to engage, eye contact is not great, she likes things her own way and she was afraid of a noisy toy (but she was not overly concerned about that).

Anyway, the outcome was that the Dr is unsure and needs more input from school and speech & language which she will then collate. We have another appointment in August for the findings.

I feel things are very up in the air but at least we don't have to wait too long!

 

[Lucy139]

Hi, unfortunately you will probably find every meeting the same (or maybe that was just me) my ds is nearly 7 now and has only been diagnosed a year after many many up and down appointments although his doctor is brilliant they have to rule out normal behaviours, they also kept blaming the fact he was non verbal until 4 years old, they said his sensory issues would get better with age and when he could communicate, it was u till he could talk ALOT they realised he wasn't getting any better with sensory, behaviours and general understanding of the world anyway If your ticker is correct your lo is only 3 so they will put most of the behaviours down to age. I was going to the paediatrician with my son from 2 and half it took 4 long and frustrating years to finally get his diagnosis, a mother always knows there child best be persistent, fight your case, email your doctor in full detail of the issues you want to be noticed, note any changes in behaviours, eating habits, meltdowns, the good the bad and the ugly in a diary which you can take with you too your next appointment, also write questions you would like to ask in the front so when you next go your have it all in one place. But most of all try not to get stressed (easier said than done), getting an asd diagnosis is a bumpy roller coaster ride, good luck I hope your next appointment is more successful xx

 

[pinkpolkadot]

Thanks Lucy! Yes the age thing is definitely a factor I agree (she is 3 & 3/4). The Dr was implying much of it is normal for her age but I spend lots of time with her friends and not one of them are a bit like her.

A diary is a great idea, thanks

 

[Starry Night]

I always feel like I screw up appointments. I never remember to say the things I wanted to say or feel to scared to speak up.

It does seem like the professionals in the UK are more hesitant in giving a diagnosis than in North America. Though, maybe my son is more autistic than I like to tell myself and it was super obvious he has it.

I'm sorry the appointment didn't go the way you wanted. Our doctor had suggested to take videos. I ended up not needing them at the appointment but they did help me see what the doctor was talking about.

 

[Thurinius]

Don't worry you will have time to discuss your concerns during the various assessments. The special needs health visitor was very good for that. You may find the dr heard more than you thought when you get the report.
But they are looking for very particular things when trying to diagnose so maybe that explains why the dr seemed uninterested, maybe was just trying to get to the symptoms/issues that would allow her to diagnose.
At least you don't have long to wait.

 

[pinkpolkadot]

I always feel like I screw up appointments. I never remember to say the things I wanted to say or feel to scared to speak up.

It does seem like the professionals in the UK are more hesitant in giving a diagnosis than in North America. Though, maybe my son is more autistic than I like to tell myself and it was super obvious he has it.

I'm sorry the appointment didn't go the way you wanted. Our doctor had suggested to take videos. I ended up not needing them at the appointment but they did help me see what the doctor was talking about.

Thanks! Yes I felt like I forgot and also didn't speak up as you say. I should have got my list out at the start to prompt me! I actually did take my ipad with some videos and pics on as I am not always the best at explaining things but she didn't want to see them which I found a little odd but maybe she thought they would be irrelevent to diagnosis

 

[pinkpolkadot]

Don't worry you will have time to discuss your concerns during the various assessments. The special needs health visitor was very good for that. You may find the dr heard more than you thought when you get the report.
But they are looking for very particular things when trying to diagnose so maybe that explains why the dr seemed uninterested, maybe was just trying to get to the symptoms/issues that would allow her to diagnose.
At least you don't have long to wait.

Thanks, that's reassuring!

Yes you are probably right and she probably was just looking to pick up on the points needed for diagnosis. I guess there is a lot of stuff that comes along with ASD that is not necessarily part of the diagnostic criteria.

 

[AP]

But they are looking for very particular things when trying to diagnose so maybe that explains why the dr seemed uninterested, maybe was just trying to get to the symptoms/issues that would allow her to diagnose.

I agree - sounds like the doctor focused on the social interaction, communication (and social imagination- not to be confused with creative imagination) as these are the triad of impairments they need to consider.

Sensory issues arent always seen with children on the spectrum either, so it may be a reason the doctor didnt take it all on board. i know its easy to want answers right away, but misdiagnosis is becoming more common as children are being diagnosed earlier and earlier.

You did a great job and it was a great idea to leave that list too - and to get other opinions is important

 

[Thurinius]

I think it's exactly that. Because there was lots of qs on the questionnaire relating to empathy I kept emphasising that my son was over sensitive to emotions. But the dr wasn't much interested in that because I guess it varies from autistic child to autistic child. Whereas she was very interested in watching my son interact or not with the speech therapist present because that would help her diagnose.