Severe Autism

[Chanello2]

I have recently been told that my dd is severely autistic and has learning difficulties.
I never really looked at her as severe but thinking about it, I suppose she must be.
She has huge communication difficulties, she finds it hard to understand spoken language and speak.
She is constantly talking but it’s all echolalia, some of it in context and some of it not. She’s also very hyperactive and it can be almost impossible to get her to focus if she doesn’t want to.
She seems to be very good at problem solving and using her intelligence. I suppose it was this that threw me off her being as severe as she is.
Has anyone else experienced being quite thrown off by this diagnosis?

How old is she? Also you’re not supposed to use the term ‘severe’ anymore so I’m wondering who said this to you? There can be a lot of disagreement amongst professionals and how she presents now can change, so please don’t feel disheartened.

There are lots of Facebook groups which are useful for parents discussing this.

Thank you @Newsenmum for your reply.
It was actually the Senco at her mainstream school who said this. Now I read it back I realise she’s not qualified to make this diagnosis. She’s 5 so hoping things improve. I will have a look at the Facebook groups.

Has she been diagnosed? Have they supported you to make a referral? I hope they are supporting you and her well.

Yes she’s been diagnosed with asd but paediatrician made no comment on how severe it is. The school is supportive to an extent.

I would agree with @Newsenmum we don’t use terms like severe or mild to describe autism now. You are either autistic or you’re not.

We would describe a child as having autism and requiring a high level of support. Autism is no longer seen as a linear spectrum so a child isn’t placed somewhere on a line from
mildly affected to severely affected, it’s more of a wheel where parts of their development are requiring more support so for your DD her communication and social skills are requiring more support but she has good problem solving skills.

@Chanello2

Hi there, was just wondering how your daughter is now , she sounds quite similar to my 5yo dd . Same language level & hyperactivity. How did language progress and the hyperactivity? Thanks

Hi @SL22 dd has recently started a specialist school setting. She hasn’t really had any proper speech intervention until now, so I’m really hoping we are able to get some tools to help her progress in her communication. The language is still the same level I’d say. A whole lot of echolalia and a few words to express what she wants/needs. Her understanding gets consistently better though which helps. The hyperactivity is still difficult, I would like to get her assessed for adhd but I was told by paediatrician that we will need to wait until she’s been in her ‘correct’ setting for a while to see if anything changes. Hope this helps, is your dd in a mainstream or specialist setting at the moment?

I agree that a Senco shouldn’t use words like “severe”. It’s a spectrum and children move up and down it, also it limits them to a diagnosis rather than seeing them as a person with a future and possibilities. My son was told he was level 2 out of 3 levels, requiring specialist school etc and he’s doing amazingly well, and we’ve been told by 16, he’ll be back in mainstream. Likewise we got told all kinds of nonsense by Sencos: it’s not autism, it’s trauma; it’s not autism, it’s bad behaviour due to mother with poor boundaries. The main thing is autism+environment=outcome. My son is amazing in the right environment, you wouldn’t know he was autistic. You put him in the wrong one and it’s really traumatic to witness, like very extreme behaviours. Luke Beardon books are v good if you’re looking for info/support.

@Chanello2 hi , thank you for update .
Yes hopefully now with the right support the speech will progress .
My daughter speaks mostly echolalia but like yours able to say wants now. Her energy too is full pelt. She's 5yo. Hoping as she matures the energy will come down abit. She's going to do 2 years in reception, I'm going to put specialist school down on her ehcp . Her school agree . I find with my dd she's very demanding, not sure if this is the adhd & she struggles to regulate her emotions , does your dd have meltdown? X

@AngelinaJolie21
Hi there, thanks for posting such a positive post. Glad your son is thriving .
Yes understand and agree about the right environment being essential. Thanks for book recommendation, will take a look x

My son has autism with high support needs. I am autistic with low support needs.

My son sounds a lot like your daughter - he only speaks in echolalia, and is incredibly sensory seeking. Running around a lot, rocking, seeking. It's really really hard. He stims by being noisy, which conflicts with my sensory needs where I'm overstimulated by noise. I genuinely feel sorry for OH as he ends up having to manage an overstimulated wife as well as child. It's really difficult to manage some of the behaviours so I sympathise.

Learning disabilities is a separate diagnosis to autism, ask your paediatrician to add them both to her record. Also, on the formal autism report should be a string of numbers which refers to where on the autism spectrum your child is (at least there was on mine a year ago). Mine for example refers to Asperger's but we aren't allowed to use that term any more.