Aspergers? Any advice appreciated. #Update post 37#

[Campinggirl]

I'm another one in the same boat. My DS 10 is currently undergoing assessment for ASD/ Aspergers but unfortunately he is extremely anxious, so much so now that he is not able to attend school at the moment.

He doesn't want to socialise with anyone anymore.

We have the ADOS booked for 18 April and the diagnosis panel will determine the diagnosis in May. We are very much hoping we can get him to reengage with mainstream schooling in September but he has been very let down by the primary school who have failed to put in any measures for his known processing speed / working memory issues on the basis that 'he doesn't have a diagnosis yet!'.

It's not the path that you would chose to take but it is the one we are on. I believe firmly that it is right to get a diagnosis if there is an issue as it can only help your child. You wouldn't deny a physical condition so why deny ASD?

[Megandllsmum]

My little girl is 8 now was diagnosed with aspergers just before her fifth birthday ... I think we were lucky ... that sounds wrong word to use! But she was picked up early by a very enthusiastic and brilliant nursery teacher who just happened to be the school SENCO we managed to get her referred to the CDC as she was under 5 and she was seen by the multidisciplinary team which was easier than individual appointments with all the different specialists... Still took a year for diagnosis though.
In infants she had lots of input and support but we are struggling in junior school if I'm honest but a lot of that isn't her aspergers but other issues.
I'm trying to get a bit more help for her at the minute for her anxiety these are the biggest issue for her , I would've thought it would be easier to access this help as she has a diagnosis but I feel like I'm banging my head against a brick wall so god only knows what's going off in her little mind.
Lots of love and luck to you all xx

[hibbie]

Sorry tried to keep this short hwever I've got much to say as usual!

Well we had our 2nd Paediatrician appointment last Thursday...it was so different to the last time! The same) Dr was much more approachable and willing to listen this time.

He had not (as I half expected) recieved a report from the school. I explained that I had chased both SALT and the school to make sure everything needed was in place before this appointment and he appeared to have notes that I had spoke to his secetary already. Not having the report from the school probably worked in our favour as I was able to say again exactly what I thought and that the school weren't seeing the same behaviours as we see at home!

We couldn't have asked for any more from DS this time...he displayed so many of the behaviours that I am concerened about. DS first of all sat totally engrossed in a tatty A-Z of London (we live in scotland!) that he often carries around with him. He totally refused to engage in any discussion/make eye contact/even look at the paed even on being asked simple "questions like what did you have for breakfast?"..eventually he started to answer but answering questions previously asked not the current one! He also spralled himself out over our knees!

The paed has now completely changed the route we are to take! Before he said he needed to see a report from the school then depending on that, we were to have genetic testing (as he says that some of DS behaviours can be caused by a faulty gene or iron deficiancy) and depending on that maybe be reffered to CAHMS. Now the paed has said DS is definitely, in his opinion, showing signs of being on the autistic spectrum and he has been referred straight to CAHMS. He still has to do the genetic/blood tests but he has refferred us to this at the same time so eveything is getting dealt with at once, instead of once after another. He is also re-requesting report from school and a report from ed psych to go directly to CAHMs.
Had a meeting with DS Principal teacher today and asked for a copy of what was sent to the paed so now have it in writing that he does not start conversations and is often overlooked by the other children (this is something that I have been given a various degree/spectrum of answers when I've asked). Although the school cannot see any obvious signs of ASD they are aware that some children manage to keep things under control until out of school and she is aware that he will need extra support even if he is found not to have asd...she says CAHMS are good at helping put measures into place either way after assesment.
I think the paed thought that we should have been upset/worried about being referred to CAHMS but tbh it was just a pure relief that things are getting taken further and at an earlier stage than we thought they would be! (and that someone else is seeing the same as us and the same as his physio that we are now discharged from picked up on!)... it's no a waiting game for the next appointments to come through!

Campinggirl...sorry things are so hard for you and your DS just now... you really wouldn't believe that things could be so hard to get help with...you are right that a physical condition would be denied like that!

[Campinggirl]

Hibbie, your description of your son at the appointment is so similar to how my son presents at his appointments at the moment.

Glad you are now being referred to CAHMs, although that service in my area is not without its faults. My top tip is to ask for a 'key worker' who is specialist in ASD to be identified from the outset.

My son also masked at school right up to the point of breaking down and not being able to cope anymore.

On a positive note my boy has started going out a bit and seeing a few friends at the park. He still can't express why school is so difficult but the LEA are sending in a home tutor for an hour a day which is better than nothing and he seems to quite like her.

I'm really hoping he will be able to make the transition to secondary and he will be getting support from SALT in that regard and we are now making plans for an ECHP even though he doesn't yet have a diagnosis as this should be based on need not diagnosis.

[hibbie]

I was just wondering how everyone was getting on and post an update on my DS.

After the last PAED appointment DS underwent genetic testing and general blood tests to make sure that there was nothing genetic or physical causing any of his issues. Everything was fine.

In July we recieved our first CAHMS appointment with a clinical psychologist (much sooner than I expected). The decision was made to keep him on and continue to the next stage of gathering information to check for ASD/ADHD/other issues. We recieved another appointment to speak to just me and DH without DS for a week later where we could discuss things much more freely without wondering if DS was listening and were also issued with 29 pages of questions, some requiring written answers and many with just tick boxes.

Within 2 weeks we had another appointment with CAMHS in which the results of our questions were discussed and various things were plotted on charts...again we were moved onto the next step (a bit like the early rounds in the Xfactor! ). The physchologist arranged a play assesment for DS a week later (i never got to go in so don't know much about what happened) and he contacted school for a verbal report on DS's social and communication skills.

Within another 4 weeks (last Monday) it was arranged for DS to have a full SALT assesment and I was allowed in with him this time. The assesment involved hm looking at pictures about scenarios and answering questions he was asked and alot about social stories, feelings etc. She also started a couple of stories about her experiences on buses (an obsession of my sons) and stopped part way through...he never even queried what happened next etc. I did recieve some feedback there and then where she did say that he obviously struggled socially and it was likely that a refferal would have to be made to general (not CAHMS) SALt. She also did say that she knew what I was thinking and that I had been right to trust my instincts and she'd likely see me again but couldn't say for definite.

On Friday last week we recieved an ASD diagnosis for DS from the Phsycologist at CAMHs. Considering it's what Ive thought and fought for for years it's actually been much harder than I thought. It was really hard sitting listening to how your 7 year old had a lifelong developmantal condition that meant he had "significant" social communications issues amongst other issues.

What was even harder was that as this is not a mental health issue we get discharged from CAHMS on Thursday this week, after we have had a TAC meeting at school with the CAHMS psychologist, the principal teacher and the class teacher. We can self refer onto a course (need to actually double check how we do this as I never took everything in on Friday) about dealing with challenging behaviours (it's likely not to run until at least January if we get a place!)and the school need to do a refferal to SALT... other than that we just got handed an information pack of leaflets that I had already read... I don't know what I expected but I hoped for a little more help!
At least I suppose we know that DS will need extra stratgies put in place by us/school help him and we are aware of this now. I am also shocked that it eventually only took 10 months from the physio getting the ball rolling to getting a diagnosis!... could hug her as she took the time out of her role to get things started...she could have ignored everything to make her job easier!
Another plus point we do have is that by chance in about June I was speaking after school to a parent in DS's class who was noticing similar issues with her son. She went the private route after speaking to me and has also (within the last few weeks) recieved the same diagnosis for her son. We have been a great source of information for each other and at at the same stage...great having someone else to speak to/run things past!

[caj]

I remember the day my ds' s diagnosis came through. It was so very tough, despite me, like you, 'knowing' already. In some ways it's like a bereavement as some of your future hopes and dreams change.
Then someone gave me very wise advice ... he is the same boy you knew and loved yesterday and will be the same boy into the future. What you are best qualified to do, is to love him now.

[bearandbuzz]

Sorry to bring up an old thread but I realised I hadn’t updated and those got it may be useful if someone was looking for help.

My update...

Ds is now 11, nearly 12, and in his first year of secondary school. The diagnosis of ASD was confirmed in writing over the summer holidays last year. I’d already made contact with the SENCO of his new school and his old school had confirmed that they were passing on all info to the new school as if he was ASD (as they didn’t have the official diagnosis at that point).
Transition went relatively smoothly, which was a relief. Just a few hiccups here and there but much better than I’d anticipated. In November however we came across a few problems on his first report and parents evening. They monitor effort levels as well as grades at his school. There appeared to be a direct correlation between where he sat in the class and his perceived effort level. Even though I’d spoken to the SENCO it seemed that not all the teachers were positioning him at the front of the class as I’d stated they should do. We also had a meeting with the SENCO on that night and were told it would definitely happen now.
A week after the parents evening he had another paediatrician appointment as they were querying ADHD. I was a little confused as he shows absolutely no signs of hyperactivity, but sent along anyway expecting to be told all is OK. It seems that there were some questionnaires filled out by myself and his old school which, once run through their system, put him highly in the ADHD bracket. Apparently it would have previously been known as ADD (which is actually something I’d suspected), but just as Aspergers is now known as ASD, ADD is known under the label of ADHD! well there you go!
One of the recommendations was that he was placed at the front of the class due to concentration problems, once I’d received the letter through I emailed a copy to the school for their records.
Fast forward to last week (I bet you can see where I’m going here!) and my son was getting himself in at pickle about his history lessons as he didn’t understand his homework. It appears that his teacher, for whatever reason, has left him at the back of the class. This is despite us telling her not to at the parents’ evening and the assurance from the SENCO that he would be placed near the forth in all his lessons! I emailed the school raising my concerns. With credit to the school I did get a phone call that day from someone in the SEN department who said she was putting together an action pack for each of his teachers in order to make sure he was placed correctly. I also received an email from his history teacher saying she’d recently been through his books and saw he was missing work and his presentation wasn’t up to standard so she would move him to the front and send him to catch up lessons (which has really pleased him as you can imagine). It’s frustrating because I tried to warn them from the beginning and I don’t want to be an annoying parent, but at the same time, it should never have got to this stage.
Anyway, for now I think we’ve got a handle on it at school. Socially he hasn’t been too bad. He went through a terrible time in the last couple of terms of year 6 where he became a target for cruel name calling, which was heart breaking. He has also experienced some low level picking on at his new school. It’s only been one child and from the sounds of it, my son isn’t the first child to complain. Although it sounds bad, I’m quite pleased about that because at least it sounds like he doesn’t stand out as a target quite so much now. Anyway, I emailed the school about it just to make them aware.

Looking back at my original post I can see I was in a tizz about whether to go down the route of diagnosis and about what the future holds for him. Now I can see the future clearly. Diagnosis was definitely the right thing for us. At times I felt a bit of a fraud as his problems pale into insignificance compared to others, but actually we’ve needed the backing of those reports to help the new school understand him. I can only imagine the situation we’d be in now if I was trying to tell the school what is best for him without any back up!
As for my son, well he’s just awesome! He knows all about his diagnosis, I’ve bought him a few books to help him see that although he sometimes sees the world differently, it doesn’t make him wrong. We’ve come to a stage where we can, mostly, diffuse a meltdown before the stress levels increase too much and I’m working very hard with him to get him to talk when things are not good (work in progress). I know that as he grows up there will be improvements in some areas and new things will crop up, but on the whole I’m much happier about the whole thing and just wanted to give reassurance to anyone who may read this thread looking for advice, it will be ok!

[HenrysDad]

Pleased to see positive outcomes for you. As the Parent of a 13 year old on the spectrum I know pretty much all the battles you have been through, but at the end of the day, they are just a great kid who functions slightly differently to the majority which brings some additional challenges and much additional pleasure.

[Mallky555]

Fabulous update x we too have had a few battles and school not always doing what they say they are going to do.
However ds is now 13 and doing well at school yes we get the odd detention for things that really he can’t help but we’re working out what works best and so far have found the after schools homework club works well as once he’s home from school had a shower tea etc his concentration was gone and homework either didn’t get done or was rushed with zero effort 🙈
It’s all trial and error unfortunately but sounds like your all doing fab x

[Megandllsmum]

Great update , sounds like on the whole things are going well... my daughter is gearing up for SATs this year , she’s stressing but I don’t know why cos she’s achieving great marks in mock tests but teacher happened to mention she thought lily could do better so she’s frightened of going backwards instead of forwards... can’t go much further forward when she got 119/120 a few weeks back but that’s autism for you , she doesn’t see the grey areas in between just black and white. We start comp in September which is going to be a big event, Lilly actually quite positive about it , it’s me getting anxious and I am trying my hardest not to show it, different kids though not knowing her is a big worry and leaving her open to bullying , her new school feeds kids from at least 10 different schools but I’ve met already with senco there who is very nice so hoping we can get a good relationship going, extra transitions will be planned soon so hoping that will be good.