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How severe is his autism?

(31 Posts)
autisticbabybear Sun 15-May-16 01:36:44

DS is 2.8 years old and diagnosed with classic autism. So far he's completely nonverbal. His developmental delay is very obvious - he is more like a baby than a toddler. His therapist paints a bleak picture of the future, basically tellling me DS will never be able to live independently while another one is more optimistic and envisages him talking at some point in the future.

I guess I will be able to deal with both outcomes in the long run, but at the moment I really need to know how severe DS is. I need to know where we stand now so I can go on without false hope - but stay motivated nevertheless. Could you please, please tell me honestly, without sparing my feelings, wether you think DS is perhaps on the severe end of moderate, on the moderate side of severe autism, or on the severe end of severe autism?

DS is very gentle. He is the least aggressive child you can imagine and has never hurt/hit/kicked anyone. He is very placid and doesn't throw any tantrums. He cries when frustrated, but he calms immediately when being cuddled. He is a fussy eater but has no other sensory issues. He seeks comfort when scared or hurt and wants to be held when he wakes up at night. He is very curious and likes to explore new things or environments. He obeys when being told no. He has a fantastic memory and remembers strange places und complicated routes for a long time. There is absolutely no self-stimulation, no stimming of any sort. He doesn't care about routines or changes.

He makes lots of noises like growling and some sort of babbling, but doesn't talk. His receptive language seems to be limited to just a few sentences although he sometimes surprises me by understanding more than I would have given him credit for. He doesn't know how to play with toys and doesn't understand even simple ones like a very basic shape sorter. He lines his toys up for a few moments, but mostly he just moves them around while making noises. Reading a book or even looking at a picture is impossible.
Sometimes there is inappropriate laughter without any obvious cause, mainly while driving in the car. He very rarely reacts to being called. His eye contact is poor. Sometimes we have uninterrupted eye contact for one or two minutes during playing "The wheels on the bus", but on other days he barely glances at us.
He doesn't point and completely ignores other children. He doesn't imitiate. His only way of communicating is pulling us somewhere (the door, a cupboard) or bringing us something we should open for him (like a packet of biscuits). There is absolutely no back-and-forth-interaction.

What do you think? I'd be so grateful for your advice.

whatamess0815 Sun 15-May-16 07:40:16

I think at 2.8 it is too early to tell. I know a few children who presented like that between 2 and 3 and some of them made lots of progress (and would be described as high functioning now) but some less so.

are you getting any kind of intervention?

Toffeelatteplease Sun 15-May-16 07:46:53

I think you're looking at it all the wrong way. Learning to deal with uncertainty and live in the here and now is one of the most import things you can do for you and your child. It's also one if the hardest

Likewhatamess I would be looking at what his needs are now and how they can be best met. Makaton speech and language therapy.

coffeemachine Sun 15-May-16 07:55:50

op, I feel for you. when my DD was dx I felt the same. I had this obsession that I needed to know what the long term outcome would be (and that it would be OK). Eventually, I learned to let go as nobody knows (Dd is fairly severe so Independence is unlikely) but I eventually started to focus on the here and now and what we can do at this moment to help her.

you have just been given at dx. things are still raw but it will get easier.

agree with PP, make sure you get max intervention.

PolterGoose Sun 15-May-16 08:06:42

Message withdrawn at poster's request.

PolterGoose Sun 15-May-16 08:13:05

Message withdrawn at poster's request.

zzzzz Sun 15-May-16 08:14:19

In my experience people often focus on "how well a child speaks" as though that will show "how autistic he is". I think that the two are not so closely related as people think. It is true that in order for speech to develop you must be motivated to communicate but it is perfectly possible to have severe speech and language difficulties or be mute and not have very severe autism.

Your child communicates well non verbally, He has receptive language skills. He manages to get what he is motivated to get (biscuits etc) and has trained you to understand the communication skills he does have. He is gentle and sounds cute from your tone (ie you feel bonded to him and him to you). These things are all great.

I supposed what you really mean when you say "how severe is his autism" is how much will it effect him day to day? I ask because the "severity" isn't really like that. For example, my ds has a really severe language disorder (this means he can speak and understand individual words and chunk phrases well, but it takes him enormous effort to put sentences together and to understand others free flowing language), his other autistic difficulties, the triad, aare not such a big hurdle. Most people very obviously think he's very autistic smile, what he is is very disabled by the pattern of difficulties he lives with. He is gentle and energetic, loving and empathetic, he can read and do basic maths, he LOVES other children to play with and is a bit of a daredevil in his own way. He is very rarely violent (he's 11 so he has hit back once or twice but his "hits" are actually all show and barely touch you. He has never that I know of ever done anything purposely unkind, mean or hurtful. He's really fun to have around and every child at school cracks a smile when they see him and says hello, and he knows everyones names. He needs supervision because others might hurt him and he gets in terrible scrapes. He has no understanding of traffic etc. He will live with us at home when he is adult (like most children do around the world) and when we die I hope one of his siblings will give him support in a Granny flat type set up, but if not we will find something suitable.

Do the things you all like doing and teach him to love the things you and your dp like.

Bananasinpyjamas1 Sun 15-May-16 23:20:18

I know what you are going through, my DS is 3.5 years and I still wonder what the future may hold. Like you he was diagnosed with classic autism, and also as severe. He had some words at your child's age, but less understanding - didn't respond to 'no'.

The more that I talk to people, the more it seems very unclear what the 'trajectory' is. Although our children do, frankly, seem to be more on the 'moderate and severe' end of the spectrum, at the moment. As they are still young, this could change. I've heard of children worse than mine becoming fine enough for mainstream schools, but also children better than mine that are still finding conversation difficult at teenagers, if at all.

A couple of things strike me, your child does not seem to be very rigid or insist on routines - my child does and I am finding this a huge challenge - this seems to indicate some flexibility which is a very useful trait, and a curiosity which is also something that could open up your child's world.

The non verbal - but does pull you to what they want. My child also did this until 3, but I've done a lot of speech work myself with him and his speech has come on so much that he can ask for lots of things he wants, in one and two word sentences. If your child can start to say vowels or consonants, or use PECs to point to pictures? Look this up and try this with a therapist as soon as you can, or train yourself in basic ways - see if this makes a difference?

Your child does not have big behaviour problems - that is also very nice to hear.

One of the most useful things I had in the early days, was 'preverbal' skills work. Basically stuff like, tickling your child, or physical play, does your child like anything like this? Because this is all back and forth, and is the basis for communication. No language needed. If you child pulls you for it's needs, that is preverbal communication. Your child is communicating! Expand as much as you can. Even turning their head slightly when you call their name, or reaching out a little if you high five, or looking at you, it's all good. It all shows the seeds of communication are there.

zzzzz Sun 15-May-16 23:40:04

The key skills I think are matching and copying. Pointing and eye contact and even words are not nearly as important.

Try and teach him to match (we used to call this "match match" as if you call it "the same" people tend to use more sophisticated language when asking the child to match. By making it clumsy to put in a sentence (the repeat word with no "the") it almost forces other people to speak in a more clipped and appropriate way.

Try colour (perhaps lots of white feathers and a few red), taste, texture, smell, temperature, of close family wink

Copying I taught with a drum, and then a piano, and then words.

Msqueen33 Mon 16-May-16 21:41:18

He sounds like my three year old dd. Her older sister was similar but speech was slightly better. She's classed as moderately autistic but her issues sometimes seem easier than those with hfa. Kids move about on the spectrum a lot. I never thought my middle dd would talk but she's very verbal now. She use to shout and scream. Sit on the path and refuse to walk but she's doing so well in mainstream now.

Youarenotkiddingme Mon 16-May-16 21:49:15

Imo severity is contextual. Everyone with autism is disabled in the social world - everyone will have strengths and weaknesses. I'd say being happy and content with life is the best outcome.

Polters breakdown is fab - yiu can see all the wonderful things about your DS and the fact he laughs and enjoys things.

Zzzzz and pyjamas have given excellent advice re communication. It really is a great skill that he can make his needs known. Do you have an iPad or tablet? There are some great communication apps on there - it starts simple with drink biscuit etc. They whole programmes are expensive but they can be used as the child's voice or to support communication. My advice would be to think about what would work best - or experiment - and then work in this.

Laurajay84 Mon 16-May-16 21:57:13

My DS has just turned 3 and received a diagnosis a couple of weeks ago. The psychologist told us that they can't tell the severity of a child that age because they are still so young and change so much.

My son sounds similar to yours but does play with toys and is bright (has been able to recognise letters, numbers, shapes, colours since he was around 20 months old), so I presume he would be classed as 'high functioning'.

Correct me if I'm wrong, but doesn't isn't the severity linked to how much the autism effects the child's life? What would be classed as mild/moderate/severe?

zzzzz Mon 16-May-16 22:45:37

Not everyone with autism is disabled.

zzzzz Mon 16-May-16 22:50:53

I wonder what these descriptors really add? What will knowing "how severe he is" help with?

The key information is that he is autistic. As an autistic child, he WILL grow into an autistic adult. This should inform support and provide context to his behaviour. It shouldn't be seen as a destination that he is heading for. Just like anyone he may be world changeingly wonderful (or awful) or tread more softly. As parents we really need to think about what IS success for our children, ALL of our children.

2boysnamedR Mon 16-May-16 22:56:24

My ds sounds a lot like yours. No one will state the severity of his ASD. They will not quantify his learning difficulties. He is four and non verbal. I'd love to know, but he's too young blah blah blah.

I think they do know, or have a damn good idea. Another parent has told me they don't like to say in case they get it wrong and parents sue!

My ds isn't classically autistic, but I I know he is severe. It's easier for me to expect worse and hope for the best.

My son has severe language issues. But I don't know if he will never talk, no one can honestly say. Agree that if he did talk it wouldn't be the magic wand.

I am beginning to see that my son is quite bright. But for whatever reason he has no intention of using his abilities. We know he can say words, he's not selectively mute, he just doesn't talk. It's going to take time to work him out, unfortunately that seems a common story.

It's very hard

zzzzz Mon 16-May-16 23:25:01

I don't think for a minute it's because they think you will sue. It's because they don't know.

Bananasinpyjamas1 Tue 17-May-16 01:22:25

Have you seen any of the measurements used in the assessment?

We got a full report, with the Vintner Scale and Gars and some others. I think it's the Gars that measures 'severity' - we got a number on a scale which was useful, (quite severe - substantial support needed). Vintner (not sure if I've remembered name right) is the general developmental scale and my DS scored below 1% on a few key areas. Which means he is below 1% of the population his age.

And my DS is only 3, so you can get a more definitive answer if you get these scales done.

I guess because so much can change, and also there is so much in the future well being of our kids that may depend on factors that don't seem obvious now, that assessors can't really paint a realistic picture for us.

I did find the information really useful though, it was painful but hit home how much my son struggles with compared to his peers. That's not to say there aren't positives, that aren't measured, but I do think it helped me psychologically just get a sense of where he is at with his social, communication, his understanding etc.

There are also useful OT and speech assessments that can shine a small light on sensory difficulties, which are sometimes severe in our case, sometimes fine.

And then I met someone recently with an older teenage autistic child, quite severe, who is going into a residential place soon. They said, that in one way they were relieved that their son was able to access somewhere for the rest of his life that could care for his needs, and support him. That their son had troubles but seemed mostly quite happy in his life, and would learn a 'job' that he may only be able to do in the centre, but maybe outside. They said that if they had a child less severe, it may be even more worrying and scary, as they would not have been able to access residential places and perhaps they may be left much more on their own to cope in the world and be less happy. I"d never looked at that perspective before. Who was happier and more fulfilled? It didn't seem to just be about severity.

imip Tue 17-May-16 09:55:55

I think about this a lot. I have a dd with ASD, cahms gave it no other description (eg, HFA), but she is high functioning, had precocious speech, is progressing well at school. I have a brother the same, undiagnosed. He is degree educated, but took him 10 years to complete a 3 yr degree. He has never worked, doesn't have friends, never had a girlfriend and lives with my parents. He is 37. I'm unsure how he'd cope in the 'real world' on his own. He started speaking. Around the age of 4. I think that when you don't have the skills to establish a relationship, work, live independently, then you're pretty severely affected. I know he is definitely not happy.

The reason I think about this a lot is that when I tell people dd has ASD, I nearly often always met with the response, oh, it must be very mild. I'm struggling to contain my rage at this response now. Around the home, dd 'looks' autistic, stimmimg a lot, becoming nonverbal after the stress of coping with the day. She started self harming at the age of 6. We are now working closely with cahms to try to reduce some of her extreme anxiety and rigidities. To be honest, my true fear is that she'll kill herself when she is a teenager or withdraw from education because she just can't cope.

zzzzz Tue 17-May-16 10:17:59

As I said, I'm not sure how these descriptors really help. The severity of the autism is not an indication of how happy your child will be.
I get the opposite internal rage imip because I think there is a strong message being accepted by all that the less verbal and indeed less intelligent are somehow exempt from sadness or loneliness or frustration or that in some way their experience is simple-happy. angry

imip Tue 17-May-16 11:06:22

zzz that's kinda why I like that dd doesn't have a 'definition' to her autism. That no matter where you are on the spectrum, you can be severely affected, whether you're considered severe, moderate or mild. I can see why these descriptions exist, but the difficulty seems to be in it's application (I hope I'm making sense).

I think about this a lot, mainly when I'm out and about and bump into people. It's put me off mentioning dds diagnosis. We try to be open about it, I guess to tell people we are happy to talk about i/accept it/demystify it. Equally, I can see how a 'they're happy in their own little world attitude' would really grate.

zzzzz Tue 17-May-16 11:10:33

What do we mean by severity anyway?

PolterGoose Tue 17-May-16 13:57:21

Message withdrawn at poster's request.

coffeemachine Tue 17-May-16 16:31:53

good question re 'severity levels'. I describe DD as severe as she has not only ASD but also severe LDs and also a severe language disorder . she will need lifelong 24/7 care and never be independent. however, a friend's son with HF autism has much more challenging behaviours than DD. he has been out of school for 3 years as even SS cannot cope with him (and vice versa). He needs 2:1 support outside due to behaviours. non if this is the case for DD. so who is more severe?

MaterofDragons Tue 17-May-16 18:36:14

Like banana my DTs had CARS done (childhood autism rating scale). They are both very severely autistic. I'm glad we did it as I can already see what skills they have gained. Children will move around the spectrum they may or may not be this severely autistic in the future. Only time will tell.

2boysnamedR Tue 17-May-16 23:10:59

Isn't severity the impact it has on everyday life? My son is non verbal but happy little thing. A friends son is verbal doing well at mainstream but very unhappy in life. It's all very subjective.

Which comes in handy when you are trying to get a ehcp or care. In that case ds has unknown needs ;0)

I was told by a disabilty nurse to treat him like he's NT - which goes in the face of everything I learnt in early bird. There's no argueing against that logic for me. I can't can I? I can't say his ASD is severe or he has learning difficulties. I am met with the face of a slapped arse

I hope she sees the irony when I tell her to dis charge ds I never had a nurse input doing things with my NT boy.

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