ASD assessment for my boy

[asdhelp]

Hi everyone,

Posting here for traffic..

I'm gearing up for my sons hospital appointment tomorrow and I need some help.
He was referred for an ASD assessment when he was 2, due to the waiting list we were seen when he turned 4. We were told it would be 2 parts of observation and assessments, so far we've had one, and it was conducted by a speech therapist (he has speech delay). We were basically told that they didn't think he had ASD but that was just their opinion.
I received a letter to be invited for a finial appointment to discuss their findings. Their findings will be a report from the paediatrician who referred him (who didn't think he had ASD), the speech therapist (who didn't think he had ASD but instead a speech disorder - which I believe he also has) and his preschool (who don't think he has ASD- due to how well behaved, friendly and social he is there).

Ive been in tears this morning after another one of his tantrums that lasted 30 minutes because I asked him to brush his teeth. He hit me, whacked his head about and screamed the whole time. I KNOW he has ASD, but no one but family sees this. Home is his safe space, the place he can let it all out. There are times I collect him at preschool and he sees me and goes straight into meltdown mode as he has had a hard day (and preschool have no idea he had a hard time, he bottles it up). My MIL is a senco and she strongly believes he has ASD and has offered to pay for a private ASD assessment if needed, but I know it's not as respected as a NHS diagnosis. She has witnessed everything that makes us believe he has ASD.

I know for sure that this appointment they will say he has no diagnosis and there isn't enough evidence to make one.
I've started yet another list to show them when I get there (I'll post it here if anyone is interested, but it's the standard list really).

Any help on what I can do if it doesn't work in my favour? He starts school in September and I'm so worried about how he is going to cope if there is no care plan in place for his additional needs.

Thank you so much for reading.

Not another one.

Not another one of what exactly @zebraaa?

OP, definitely make the list. It won't hurt to have it to hand so that if they do dismiss your concerns you can back up your view. If you have specific examples of behaviours, note those down too. You can ask for him to be referred to a second opinion service, which service this will be varies from area to area (it's the paediatric neurology team where I live).

Good luck and keep going. DS was not diagnosed during his first round of assessments as they said he didn't meet the threshold but by his second round of assessments he did meet that threshold and was diagnosed.

It’s hard when they are so young sometimes, especially if a lot of the things can possibly be explained by another cause - in this case his speech delay.

If you don’t get a diagnosis tomorrow try to avoid being discharged and ask for further assessment in the near future. I presume SALT are still working with him?

And support from schools should be based on needs not diagnosis. Have you spoken to them about your concerns?

@Zebraaa what do you mean by that?

Can you not sense the tone of the OP post?? She's clearly exhausted, and knows her own child (though I'm sure you presume to be an expert on all matters)

This EXACT situation happened to me and my son - who is now 11 and still lost in the system of waiting lists. We first tried for diagnosis when he was 8!

Who do you think you are?

OP I really feel for you

I think lists are a great idea and I kept a diary for my 3yo too. (I have a 4yo diagnosed quickly as very obvious and a 3yo diagnosed with SPD and SCD but is due an autism assessment in a few months).

Be very proactive and don't be afraid to explain everything that worries you.

It's a tough one but I wish you the best of luck! The tooth brushing is a real issue for my 4yo. It's a sensory meltdown he's having lovely not a tantrum! You've got this x

Might be worth videoing his behaviour. Anything you see him doing which you believe to be attributable to his asd. If no one else witnesses it, they need to be shown examples.

@Zebraaa also not sure what you mean by your post? I'm not a regular user of MN, and I have no idea about other posts circulating at the moment. But thanks for your not so helpful comment..

Thank you everyone else for your responses. I am completely exhausted, and I'm pretty sure I'm going to be a mess tomorrow! I am planning on asking them if I can record the conversation so that my MIL can also hear what they have to say, to give feedback, plus I can listen back to anything I may have missed.

I have my list, and examples ready for tomorrow now. I will also definitely refuse to be discharged from the service, and ask for a second opinion.

I always plan to record situations, but I can't leave him during it to even think about recording (if you know what I mean?).
Example- when he is getting distressed because of the noises around him, I'm comforting him and ensuring he has his ear defenders on.

It is really hard to 'prove' at such a young age, and he definitely becomes hyperactive around strangers who deem him an active social child.

We are still under the care of SALT, but it's now been 8 months since his last block sessions and we are back on the waiting list just waiting.

I have spoke with his school and had a meeting with the senco, who was lovely and said she will have a look over the details and get back to me before he starts school. His current preschool senco also had a meeting with her and spoke of her findings (which was being sensitive and getting overwhelmed easily). I'm hoping it's enough to have extra support.

Thanks again everyone, it's lovely to hear such kind words after a hard day x

The speech therapist will be a specialist in communication who works on an autism team. Your mil, with respect, is not. Usually when we don't make a diagnosis of autism, we don't just say "it's not autism, bye", we talk through what we think it is that is causing the symptoms that parents are seeing. This could very well be caused by a DLD (developmental language disorder) or by significantly delayed speech. if this were the case we might expect an improvement as his speech improves. What clues have you seen that make you believe he is autistic?

Btw best practice advice is to try to avoid ear defenders except in the very noisiest of situations. There is evidence that they exacerbate noise sensitivity. Keep them, if you don't already, for rare occasions not general use.

We took our 4 yr old in for his assessment in April.

He was in a fine mood & having such a good day. That made me want to cry, as I felt they wouldn’t see what we did. I feel your fear & the thought of still being in the same situation for another year or two 😖

There’s a lot of behaviour that isn’t “negative” that’s associated with asd, though & it wasn’t even close for our DS. They’d seen more than enough to give him his diagnosis. We’re still waiting on our eldest. They’ve not even talked about assessments yet.

What type of assessment are they doing do you know?

I’m so sorry OP. Both of my twins were diagnosed with ASD age 2 and reasonably quickly - each had one MDT and a SALT assessment separately and were diagnosed right away. They’d both regressed and no communication skills, no language, no social interest, regression in play skills... but we must be extremely lucky to have been diagnosed so quickly.

I know it sounds awful but have you managed to get anything on video? I’ve found this really helpful to show to doctors, all sorts of things. It helps them to see what we see. I know it’s not nice to film your child when they’re distressed, but sometimes what doctors see is so different from how they are outside of that.

Do you keep diaries of issues?

Have you applied for an EHCP? If the nursery won’t you can do it yourself. I’ve just done it for mine as the nursery had months to start it and just didn’t.

Another thing that helped with us was getting short written statements from people involved with DS - literally a paragraph or two and it doesn't have to make an armchair diagnosis or say that they believe he has xxxxx, just how they find him and his behaviour, any concerns they have, etc.

We had one from his youth club leader saying how he acted while he was there, one from his swimming coach saying how he is there, one from the babysitter we were using at that time, one from the HV who had known him from birth. The common theme across all was that, in their experience of being around him, he did not act within the expectations for his age and the situation. It also showed that he was behaving unexpectedly within a range of settings, whether we were present or not.

My ds was diagnosed aged 9, the SENCO at his primary school swore blind that he wasn't autistic & gave very little support. He had a session in school with a SALT & then we went to the hospital for the full assessment. At the assessment there was a child psychologist & a speech & occupational therapist who spent time talking to ds while I spoke to the psychologist. We were in about an hour & then asked to sit in the waiting room while they discussed their findings, when we went back in they gave a diagnosis of ASD ( Aspergers) It took about 3 months from the assessment to receiving the report with full diagnosis & then being offered group sessions for parents & regular appointments with a neuro disability consultant. I applied for DLA after getting the report & initially got turned down but after speaking to the assessor & explaining what I had to to for ds & what help he needed got lowest care & mobility, after a year of having real problems with ds I reapplied & got his care increased to the highest level as he doesn't sleep at night, has panic attacks, self harms & has suicidal thoughts. You might not want to apply for DLA but I found that having a piece of paper saying he got the benefit opened doors to getting more help & support. I strongly believe in gut feelings & you need to convey to the consultant what your thoughts are, it may help to keep a diary for a week or so of your son's behaviour & your concerns to give the consultant more to go on.

One thing that helped us was a star chart. We found it in the pda website - ill get a link in a minute and come back.
We then showed it to professionals and school and they were quite responsive to it.

(Toothbrushing is quite a sensory issue for a lot of children. You can get non foaming flavourless toothpaste which might help)

Here is the star chart (pda is a type of sutism which our son doesnt have but the chart still helped)
The good thing about this is it helps identify triggers and you can start to use stratwgies to help.

www.pdasociety.org.uk/families/evidencing-behaviours-and-strategies