Autism Assessment

Udosdottir

Hiya,

I have twins, both of which have been suspected to be on the spectrum on and off for pretty much their whole life.

The paediatrician offered for one of them already 3 years ago, and now, finally, visited them both in school, and says she's sure they are masking and both *are* on the spectrum, and offered to add this to their already existent list of diagnosed conditions. "If I really insist."

So far so well. I am definitely not fighting a diagnosis! In my book, it can only be helpful to understand a person better. But when I reported that for one of them 3 years ago, you (some of you) told me she should get a proper assessment, which never happened. And now for the other one, the paediatrician again doesn't offer anything beyong adding ASD to their diagnosis.

I think a proper autism assessment would be needed and useful. But she's not having any of that, claiming it wouldn't be helpful to "label" them further. From what I heard, there would be specialists looking at my children, listing what they can and what they can't do, their strengths and their weaknesses, and I think that would be really helpful also with regards to talking with their school.

For one of them I am suspecting PDA which is also not officially diagnosed.

How do I go about this? Do I have to pursue this privately? How were you or your children diagnosed? I am confused by this paediatrician's attitude. Maybe I just don't understand the system properly? We have seen her last in September, and still have had no letter confirming the ASD - but the kids are transitioning to secondary now, and I'd really like something in my hands. (Yes, I tried phoning them regularly; they told me they'll send something and I should be more patient in turns. The next appointment with the paediatrician is coming up in a few weeks. Except asking for a proper assessment again: How should I proceed?

(Btw. we are in Notts, don't know whether that makes a difference.)

Udosdottir

Hi @Teddybear12, thanks for the welcome. Have I not posted this under the autism section? I was intending to. The (new) forum is hugely confusing to navigate and clumsy to read - at least for me.

I am in contact with the parents help team. we have huge difficulties with school placement (one of them currently has no assigned school), long story, we already have a solicitor but he also says that as long as they are not naming any school, all we can do is plead with them, and we can only fight their decision once they have taken one ... but I wasn't going to talk about that too much.

I wonder more about: whether and how to get a proper diagnosis at this point. I feel a bit lost, with the paediatrician just saying "let's add it to their list" without actually properly assessing them. She's just going from my and school's report, them self-reporting (that apparently was the biggest step forward that convinced her) plus her own one-time observation in school. Why are we not referred to an autism team? Isn't that normal?

Udosdottir

@Teddybear12 Thanks again. Maybe I could try the GP again... I am assuming however that they wouldn't do anything. Last time they (GP) have been very dismissive, pointing to the fact that they (twins) are already under regular care of a paediatrician under whose responsibility this falls.

And the paediatrician and their current school are already dealing with them on the basis of ASD being diagnosed. But from what I heard hear, people get more from an assessment than three letters on a doctor's letter. And on the website you linked to, it also says that an autism assessment would be done by an "assessment team". Our paediatrician just says that would not be useful as she is fully qualified to make that diagnosis and that's that. I just wished we would get more information out of the whole thing. Especially regarding my daughter and suspected PDA. But maybe that is all I can expect? I really don't know whether I am in my right to ask for more, or whether that's that and that's o.k. The paediatrician surely seems to think so. 

The reason why I am worried although her current school is dealing with the situation well, is that she is in year 6, and I am worried about the transition to secondary school. (And also, with SATs coming up, demand avoidance is becoming a real problem.) The educational psychologist has visited them both in their current setting (school initiated that already years ago as paediatrician was so slow to react). The psychologist, however, also only visited very briefly (and without a proper ASD diagnosis in her back) and gave my daughter's teachers anger management strategies for her. Luckily, due to her other issues, she already has 1-1 support the whole day, and her TA supported my view that she's not angry but anxious, and since we and they employed anxiety management rather than anger management, her behaviour stopped being disruptive. But she'll be changing school as she's in year 6 now...

poppy123456

Hi,

I disagree with the Paedatrician they can't just "add" ASD to their diagnosis because it's not right for them to do this at all. You can't just "look" at a person and decide "yes, they have ASD because it's not that simple at all.

I've gone through all this with my daughter and had to fight for 14 years to get the diagnosis. You are correct when you said that an assessment is needed to determine whether they have ASD or not.

The assessment can take several months and lots of questions about the child's life and how they developed will be needed. I had to attend 2 appointments which lasted 2 hours for each one and questions were asked from when she was born, when she first crawled, walked, first words, how she behaved with others, did she play alone, could she speak, count etc. The questions were endless and it was one of the most difficult things i've ever had to do because she was 16 and i had to try my hardest to remember as much as i could. Thankfully her sister was with me and she's 4 years old than her and could remember a lot of things from a young age.

Observations will take place in school and possibly at home, though my daughter was 16 when the assessment started and observations took place at college over 3 seperate visits ranging from in class to at break.

She had to attend appointments to complete various tasks which were part of the assessment. These included observations, cognitive and language ability tests were also completed.

Once everything was completed a full report was written with everything they found that included her weaknesses, strengths, abilities, everything from a baby to her current age at the time. They didn't miss anything at all.

The paediatrician may think that a diagnosis isn't going to help them and it's just another "label" but it's not, far from it. For me and my family it was answers to everything that really didn't add up, why she was the way she was, why she couldn't speak, count, read or write until she was 7. It gave closure to something that was deep inside my heart, not just for myself but for her too.

She was indeed diagnosed with ASD and a learning disability too. My thoughts for 14 years were right.

It didn't change her and never will, she is who she is and i love her dearly. I would literally do everything for her and i have. She's 21 now and i'm still fighting to get the help she needs because if it wasn't for me then i have no idea where she would be.

If i were you i'd start by speaking to their GP and the school. If they agree to do the assessment be prepared for a long wait because those lists are huge. Most important thing of all is don't give up, keep fighting because eventually you'll get there.

Good luck.

Udosdottir

Thanks again, and @poppy123456 for taking the time to typing that up. I'll keep on trying for them.