'ASD like difficulties better explained by other conditions'

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Sorry if this is long! My DD is 10 and for the past 6 years has had a number of mental health problems, mainly anxiety and Non Epileptic seizures.

She was diagnosed with epilepsy at 4. Prior to that there were concerns about developmental delays, late walking (16 months), toe walking, coordination difficulties and unclear speech. She also had sensory issues- hated loud noises, certain materials, use to rotate feet constantly.

We did suspect she was on the spectrum but at the toddler/ early school years stage there wasn't an immediate urgency to get her assessed.

When she was 6 everything changed.
She had a tonsilectomy with a general anaesthetic and tbh, nothing was the same after that.

Academically, she began to struggle. Luckily we had contact with the neuropsychology team at the hospital and they undertook assessments.

These assessments showed that prior to age 6 she was sitting above average in IQ, when she was tested at 7 this had dropped 20 points and she was now 'quite a bit below average' School was a major source of anxiety and there were problems with her not being able to communicate she was struggling.

School weren't great tbh and it took a new head teacher for things to start becoming slightly better.

Epilepsy diagnosis is all over the place. She was diagnosed with absences and general Epilepsy, then focal seizures, then non Epileptic seizures linked to the school anxiety. She has most recently been diagnosed with Jeavons syndrome which is absence seizures with eyelid myclonia.

We wrote to the school council as we felt that there were a lot of traits that could be ASD related

We were told we would be referred to assess her communication issues and saw a SALT specialist for 6 sessions, online.

A lot of those sessions there were problems with the woman's internet so it really wasn't the best experience. My DD would answer and the video would lag, she would then change her answer and it was a bit of a disaster.

During this time she also had a follow up with neuropsychology at the hosp and they have diagnosed executive disfunction based on the decline in her IQ scores. This has been link to Epilepsy.

We heard last week that the SALT specialist had met with the wider team and it was decided that although there are 'aspects of developmental history and communication difficulty aspects that fit with ASD', there are 'other factors that better explain my DD difficulties.'

My question really is, what should I do now? I just feel doing 6 video sessions do not allow them a great understanding of the difficulties my DD faces.

I truly believe she is on the spectrum and I just don't understand the idea her difficulties 'could be better explained by other factors' and I worry this will hinder the help she gets or could get.

I know epilepsy is a co-morbid with ASD. Could I push for her to be assessed anyway?

Sorry this is so long, and I've posted here as I got no response on the SEN board
any help appreciated.

Yes, I would insist upon another, better assessment.
Trust your instinct, and you are right about accessing better support.

Agree that 6 online sessions sounds pretty inadequate.

I think it would be good to ask the SALT specialist/team for more detail as to how they have arrived at their conclusions. Also to understand whether their conclusions are likely to be definitive or are just a best fit for now which could change and involve reassessment in future.

Thank you both for your replies.

I just feel that there has been so much muddy waters with diagnosis that 'a better explanation' sounds really not as definitive as it should be.

I'm also not sure what my rights are regarding assesment. Does SALT act as a kind of gate keeper to the full assessment? Depending on the outcome?

Hi op,
It sounds like your dc has had a rough ride. In terms of your 'rights', I don't believe you can insist on an ASD assessment if professionals do not feel it's warranted and difficulties can be attributed to other neurological conditions. You may need to pay privately for the assessment.
You don't mention social communication? How does your dc present in this area?

Insist on proper assessment. They can’t say she doesn’t have ASC if she hasn’t been assessed properly. Non of their assessments are standardised for virtual use.

For me it would depend how crucial you perceive the ‘diagnosis’ to be. In our LA there is no need for any diagnosis in order to access any service, it’s done purely on need. So as long as her needs are described accurately then what we call it wouldn’t make any difference. If you think there are needs which haven’t been fully explored or described accurately then I would push further, or if you need that in order to access services.

How could this be properly assessed over a poor internet connection? Sounds very far from ideal. What do DD's school think? Do they support you in thinking she is on the spectrum? Could they get someone in to observe her? This happened to my son and the lady from SEND who came to observe him was brilliant! She couldn't diagnose but her report was very helpful.

SALT here, I would question why they haven’t been to see her in a social setting (usually school) as part of their assessment before making that decision. Autism is a social communication difficulty and therefore assessment to either rule it out or collect evidence that it might be present should include observation in a social setting.

Also how much research have you done about Autism is girls? They are so much better at masking social difficulties and the diagnostic criteria is based around research of mainly male Autism. This can mean the road to diagnosis is a whole lot longer.

I was wondering if you have considered fragile x as a possibility. It is the leading genetic cause of autism but presents differently and is a lot milder in girls than in boys. Things that made me think of it are the anxiety - this can be the main symptom for girls, epilepsy and your daughter's reaction to anaesthesia which are common with fragile x. As for autism speech and sensory issues are common. It can be tested for with a simple blood test. One in 200 people are carriers so it is more common than people realise.
fragilex.org/fxs/uniqueness-females-fragile-x-syndrome/

Hi Op,
My 5 yr old has ASD. What I can tell you is that it is a really large spectrum. It's not necessarily a case of slightly autistic or very. It's like a whole array of areas, which are more effected for some, than others. My ds finds social communication tricky. So many people have said to me how surprised they are that my ds has autism, but the reality he is effected quite significantly. He just doesn't appear as a 'typically autistic' child. I say that with tongue in cheek, as peoples understanding of the condition was somewhat limited. It is improving but very slowly. I find the experts are the actual parents with children who have ASD.
I'll be honest, I was amased my son passed his developmental check. He couldn't play, talk, no babbling etc. You have to trust yourself, and get your dd tested. SALT looked at me as though I was a neurotic moron when I suggested a developmental issue. Surprisngly though, it's actually usually a highly trained SALT who helps assess children for autism. The amount of brick walls we've been up against. I'm still wanting my son to be assessed for Dyspraxia also, however yet again, I'm met with confusion.
My ds went downhill significantly after a one night stay in hospital. He literally shut down for almost 6 months. No eating, no getting of the sofa, it was heart breaking. He had clearly felt traumatised. It took me over a year to slowly build him back up again. If your dd is assessed and has ASD, then a whole load of support can be put in place correctly. Sadly, I feel for most parents with a child with SEN etc, spend many years fighting. It's exhausting, but a very worthy cause.

Thank you all for the replies.

My daughter is great at masking. In fact I think that's been half the battle. To most she is a sociable girl, she can be good with eye contact (to an extent) but a lot of this is mimic behaviours. At home it's very different and there are frequent meltdowns because she can't maintain it.

Her communication has always been an issue. It appeared to be more of a physical one as she had poor speech and it was unclear. But I saw SALT when she was 3 and was told there wasn't an issue (although strangely they have me an Autisms website as they had strategies that could help)

As time has gone on it has become more apparent as her peers get older. She struggles with maintaing friendships and her communication with peers is literally her own interests. She doesn't provide context to communication and it's all becoming very obvious to her peers which is causing her difficulty. I think her difficulties are mild enough to be missed and I just feel quite fobbed off. But I'm not sure if that's just me being unreasonable as to my expectations.

I don't feel that her other difficulties should be used as an excuse to exclude an add assesment when they have already mentioned she does fit some of the criteria.

[quote Weepingwillow22]I was wondering if you have considered fragile x as a possibility. It is the leading genetic cause of autism but presents differently and is a lot milder in girls than in boys. Things that made me think of it are the anxiety - this can be the main symptom for girls, epilepsy and your daughter's reaction to anaesthesia which are common with fragile x. As for autism speech and sensory issues are common. It can be tested for with a simple blood test. One in 200 people are carriers so it is more common than people realise.
fragilex.org/fxs/uniqueness-females-fragile-x-syndrome/[/quote]
I will look into that more willow. She had a gene panel done during epilepsy investigations but I'm not sure if it would have included this.

It's all been such a blur and an absolute mess of a situation with numerous diagnosis and drug changes.

It's hard not to feel incredibly let down and therefore I can't be objective!

We are still waiting on a EHCP being done as covid has complicated things. Just can't help feeling she's been failed by both the hospital and the school (and me!)