How to explain DS to people when we don't have any diagnosis?

[Surrealistrhinoceros]

Hi

DS is just 6 and definitely not 'standard issue' - he has some fairly significant sensory issues, school work is a bit of a struggle, fine motor skills are rubbish. Most significant in terms of explaining him to other people are behavioural issues that range from minor eccentricities on a good day to wall to wall aggressive horrible meltdowns on a bad day. At school he is generally fairly compliant.

We have been involved with CAMHS for the past year and as he is adopted they are pushing attachment difficulties and refusing to assess for ASD which I think is a distinct possibility. We are in the midst of a very slow assessment Process for dyspraxia and Camhs have identified the sensory issues .... Etc

Anyway I find myself in a sort of limbo where because we have no official 'label' I don't feel justified in saying to people ''Ds is as he is because of X, we will deal with it on the following ways, we are not lousier parents than the average :) ' Result: I go out, meet up with friends, take DS to activities etc much less than I would like to. And when he is kicking off or behaving oddly in some public situation I have no idea how to explain.

Well aware that a diagnosis or 'label' wouldn't necessarily mean people were suddenly able to tolerate his worse behaviour, but if I had something to say I think it would be easier.

Anyone been here and can help?Thanks in advance.

mmm... sometimes I have been in a situation where someone said very proactively "Oh you must understand my DS is autistic" and i kind of felt like... It was too much personal info & not justified for me to know so much when nothing had happened; I also don't think most people understand what autism is and it's not something you can properly explain in a 60 second conversation, so the label clarifies little.

I just wish folk would say something like "Please try to be patient, He's very sensitive & over-reacts to things; I'm sorry if he's upset you" or "do get my attention if you think he needs me" or whatever else you actually need from other people, such as casual acquaintances. That would be useful information that could be imparted simply.

It's different with people you see regularly, but then you have more chance to discuss & explain child's needs anyway.

fwiw, even NT 6yos can have fairly ridiculous tantrums, so wouldn't really get my attention unless he was breaking windows.

OMG !! are you me ? My ds is also 6, adopted and camhs are pushing attachment !! and refuse to accept it could be ASD. Sorry not much help but you are not alone.

And me! My DS is also six, has GDD (not diagnosed of course), he's more like a 3 year old and has eccentric behaviour. No one wants to know and they poopood the idea that DS is on the ASD spectrum - he has many ASD traits. I would like him investigated further, dyspraxia would be a good place to start but no-one's mentioned that. He also has many sensory issues, hypermobility and hyperactivity. I feel as though everyone is saying he's like this because I have bipolar disorder (bp 2) and have recently separated from DS's father. He has not been seen by an educational psychologist. Both CAMHS and CAF have been useless - just pointing blame or piling on responsibility on my shoulders (I also have a diabetic (type 1) DD. Like OP, I would be fairly keen on knowing what? why? how? and when?

Most english NHS PCTs allow parents to self refer to OT. I know that our PCT has a form online to fill out - you don't need to go via a GP or paediatrician.
Can't guarantee how long the waiting list is, but if you haven't seen an OT for sensory/dyspraxia checks, you could start the ball rolling?

How about saying "my son behaves like this because he has some sort of special needs, but it doesn't have a name yet as he's still being assessed"

Is that what you meant?

Thanks guys. Useful range of views. One key thing is to feel able to say
'he has difficulties'' I think, and not feel like a fraud despite lack of labels.

Interesting im not the only one who's got into the attachment box and now can't get out of it! I freely acknowledge DS is likely to have attachment issues but there seems to be a lot of other developmental stuff that isn't being properly addressed. Same for you?

Aunt evil we have an OT appointment once we hit the top of the waiting list, thanks for asking!

'he has difficulties''

much less long winded than my suggestion!

My D has GDD, she's 2.5 at the level of 9-12 months depending on skill area. If the situation arises I just say 'she has special needs'. If they ask more, I say we dont know yet but shes about a year old in terms of what she can do. With children I sometimes say 'shes still learning' or say they need to do something more gently/slowly. I often also point out: 'she likes that - see shes smiling' or shes trying to say hi (she touches peoples faces to say hello.)

I am convinced my ds2 (nearly 4) has AS but the local paed helpfully told me all of his problems (including sensory issues and lack of eye contact) are behavioural and occur because I have such poor parenting skills! (I am an experienced teacher, and have two other very happy, well-behaved, if sometimes feisty, definitely NT dcs, so strongly disagree with her suggestions!)

Ds2 often has meltdowns in very public places, uses very inappropriate conversation or behaves in ways that show he is finding a situation totally overwhelming (we - very quickly, and missing out all non-essentials - navigated a supermarket with constant noise ranging from a whimper to a full-on scream after he fell over on the way in, the other day). I usually find that people are very sympathetic and understanding, but on the rare occasions when I find I feel I need to explain the reasons for his 'eccentric' behaviour or if people are plain disapproving, I just tell them he 'has issues' and if necessary, they should understand that because of this he finds the situations 'very challenging.' I feel happy with this explanation, because I know it to be true, and don't feel I've used a dx that he doesn't (yet) have.

Also, with his older sister (5), who is wonderfully tolerant and understanding, but can find it vey hard to understand why he behaves in certain ways, I have explained that he 'thinks in straight lines, but most of us can think round corners and in circles, as well as in straight lines.' She found this an easier way to understand his need for certain rituals or why we approach things differently for him at times. I have overheard her explain things in these terms,both to him and her friends, at different times and they all seem to understand and accept this.

I don't know if either of these work for other people, but for us, it seems to help... along with an ever-developing thick skin/lack of regard for other people's unfounded opinions!

I'd love to hear what other people say, as it's always good to have afew tricks up one's sleeve for new situations!

Thank you! I will try some of these. Am thinking the first stop will need to be our new neighbours after an almighty meltdown yesterday morning so they can be guinea pigs for the new approach.