Help with getting an ASD assessment for my DD

[RigbyandMordecaisMum]

My beautiful DD has so many issues and is going through quite a tough patch at the moment. Deep down I know that it is likely she has ASD and it is up to me to try to help her.

I want to get her assessed, I'm guessing I'll have to ask the GP to make the referral. Should I put it in writing/phone/make an appointment? I'm useless at talking to people about serious stuff like this. I worry they will just dismiss me as another useless parent with a badly behaved child, or worse :(

Any advice?

Write down everything you are worried about and then go to your GP you do not have to take your Dd, just make the appointment in her name, then you can talk openly and share your list! You need a referral to a developmental paediatrician if you can get one.

Good luck

That is what I was afraid of, that is the point I always come to then have to back down because what I write or say, does not look like the normal checklists for ASD. This is my failing but it isn't getting any help for DD. I am so worried sometimes when i think what the future may hold for her.

I find it so hard to summarise and put stuff in order but this is the things that happened today, that are causing problems for DD.

Refusing to share toys (but only with certain children) but other times she will play happily with them (the same children) and not those she played/shared with today.
Screaming shouting and saying unpleasant things to and about other children. Also adults when told by them to stop.
Pushing other children and trying to hit/kick out when they were nearby. Hitting/kicking/trying to bite adult when taken away from situation. In the past has actually bitten/spat/scratched/punched/hit/ kicked adults and children.
Being told to stop an activity/asked to share/told behavoiur unacceptable just increases the rage. She becomes out of control, hitting out alternating with running away, shouting, crying, whining, trying to deliberately annoy others. Also pinching/scratching herself, calling herself names, saying I hate her.
It takes a long time to come down from all this. Any slight interuption, noise, even someone looking at her during that time and it all starts up again.

Its exhausting but then she is calm again, like nothing ever happened. Playing happily with the boy she was shouting she hated/trying to hit right before. That was all in just 2 hours today. Some days it is like that from morning till night. Other days it is nothing like that!

Just write that down in bullet points.

I wrote my gp a leter, booked a apointment and handed it over. Worked well as I didn't forget what to say and I could write it and rewrite until it was consise.

National autistic society website has lots of advice too. Look to see who diagnoses in your area and ask for a referral to that person.

Don't assume your gp won't listen. They should. If your in a practice - which gp would be most likely to listen?

If they don't listen then start a diary. Book again in three months and go down with the diary.

Don't give up at the first hurdle but you might be pleasantly surprised.

I'm no asd expert but if your dd is saying things about herself and hurting then I really think they will refer. They should listen to you.

How old is she?

Have you looked at the criteria for PDA ?

It is part of the autism spectrum but presents in a different way and doesnt always "look" like autism.

People placing demands cause huge anxiety which leads to the fight or flight instinct kicking in!!

I agree with 2boys just take the list from your post or post some more and we will help you put it in order.

Yes I've read about PDA before and she definitely fits the criteria far better. But not always/everyday. Sometimes she will do something quite happily and easily with no fuss. then the very next day, exact same thing is a problem! That really makes me doubt myself, when she has a good day and I think I'm trying to see something that's not there. So I do nothing then next time its a bad day I regret it.

OK other things:

DD is very behind socially. She is 8 (9 next month) but does not get the social intricacies of other girls her age. She wants to be friends with them but can't really manage it, comes across as very immature for her age. Things tend to go much better with younger children. she has also been bullied quite a lot because of this, but sometimes doesn't see it. People to her are classified as either good or bad. If they are good then they couldn't possibly be a bully, but if they are bad almost everything they do, even if totally innocent, DD will see it as a direct threat to herself. If we see a certain girl (or any of her family) from DD's former school who was unkind to her, say in the street or even drive past her in the car, DD gets hysterical. This is despite logically the chance she would do/say anything in public while I'm with DD, being very low. I reassure her each time but it makes no difference.

In lots of other aspects too, DD is also quite behind her peers. It has always been this way since she was a baby, but always with just enough progress to keep her in the range of 'normal' e.g walking, she did not walk and showed no signs of it until 17 and a half months (cut off for referral for investigation was 18 months) then suddenly over night she was walking unaided perfectly on her own. This has happened with many of her other milestones over the years. Recently she has gone from do almost no writing/scrawled illegible letters jumbled on a page (for 4 years at school) now suddenly last week she can write in sentences, with punctuation, neatly spaced along a line.

Your second post shows more unusual behaviour. I would lead with this kind of thing. It is less likely to be easily passed off by a busy gp as you looking for an excuse for poor parenting.

Try to spot triggers for the other less acceptable behaviours. Loud noises, bright lights, certain sounds, certain clothes or activities.
Then mention the triggers as causing the behaviours rather than focussing on the behaviour itself. This will also help you to manage it, as you can divert away BEFORE a meltdown, and warn teachers to keep her away from those situations, and teach her to recognise her reactions.

I've taught my 4 yr old to politely say "I'd like to play alone please" instead of screaming "go away, don't sit near me" when she needs space. She's very proud of herself when she says this, as she finds it very hard to talk to other children. Better with adults tho.

Do lots of research on subtle symptoms in girls, style of play, ask teachers if she does eye contact ( I thought my dd was fine cos of her excellent eye contact, turns out it was only with me...)
Is there anything repetitive (speech or activities) , restricted, sensory.
Eg, same routes/ routines every day, food refusal (mixed food, or specific textures) needs labels cut out.

A year on, I still look back at my dd of two years ago and think it's so obvious in hindsight, but at the time, she just seemed quirky.

I brought a 6 page typed letter with me to the paed, prepared it over the two months I waited for the appointment. It was grouped into social, language, communication, physical, and about 7 other sections. I just kept a note open on my ipad and added to it whenever I thought of something that seemed unusual, no matter how small. When I read it back, it was blindingly obvious.

I suspect my overly obsessive preparation was seen as another tick box
Genetic history of asd? Tick.

Forgot this: only thing DD did early was talk, 1st words well before a year and from then on never stopped. She will talk and talk at people but only if she wants to. Mainly adults (they are more tolerant I guess and will listen to her waffle on) and its seems to be irrelevant whether they are a complete stranger or not. she will often interrupt too and try to switch the topic if its something she doesn't want to talk about.

Also lots and lots of pretend play, endless imagination, though sometimes it is repetitive and copied from books/TV not always by any means. Very controlling in pretend play with others though, telling them what they should do/say next. Huge meltdown when they (obviously) don't want to comply. Again this happens a lot but not always. The good/bad person rules seem to apply here, she will tolerate a 'good' person not complying better than others.

Themes for her pretend games also often tend to be acting as baby or an animal. Not always happy to stop them when asked either, more anger/aggression or crying/whining/saying you hate me, I'm horrible/stupid etc. but as ever not always, so it gets quite unpredictable. other times she will just ignore request and carry on. At school (forgot to mention she is now HE) this happened frequently- crawling round classroom pretend to be a cat (after playing cats with others at break) asked to stop but carried on, escalated, DD got angry and started hissing and scratching (like a cat still!)

FridayJones how long did it take your DD to remember to say that? I have tried and tried to get DD to do similar. It never works. currently she will growl at others if they come near her (but only when she doesn't want them to) and also what happens if the other child says no/doesn't move away? for DD she would end up physically making them go (unless an adult intervenes) which obviously isn't good, but then she will blame them for her action 'because they didn't go'

Rigby you are doing the right thing to take action.
I recall reading that about this age the body language starts to come thicker and faster, and is more subtle which widens the gulf between mainstream (bog-standard) kids and you dc.
All the advice here is excellent.
Just an idea, if you can get her into groups where she is with younger kids, or taken under the wing of an older buddy that might ease the pressure on you and her.

She goes to a mixed age/ability group (where I work) and like I said tends to get on better with those younger than her (with some exceptions) but also she really wants to play with kids her age too and currently idolises one in particular (this has happened a few times before) which doesn't always go right, but sometimes does too. there seems to be no black and white here, so I guess there are other factors at play too. I've also noticed the older children thing, when they are happy to indulge her/let DD call the shots it goes well.

DD has recently left Brownies too as she was really unhappy there and struggling too much. In contrast she is thriving at Cubs (yet I worry it could all go wrong there too in future) In general it seems to be that the Scout leaders are more supportive of differences (Brownies was basically, fit in or f* off) but also I think she finds the more boy heavy mix, socially easier to deal with. Plus again there are a few older ones who I've noticed are so kind and really good with DD.

Also in answer to previous question yes she does have some sensory issues too. Noise, always complaining things/places/people are too loud, wears ear defenders frequently. yet on the flip side is incredibly noisy herself and doesn't seem to notice this. Touch is her big thing. she has to touch everything, even when told not to or its dangerous (fire, knifes) My phrase is always that DD looks with her fingers, as she can't seem to resist touching anything she is looking at. she loves all things squishy/mushy/wet (always playing with water. Doesn't like wear shoes and socks, would walk outside, even in cold/rain with none (this has happened in the past) but no issue with other clothes except having a terrible dress sense -tights and t-shirt only (in January)does not equal dressed ready to go out to the park DD! Also still puts things in her mouth a lot and chews her fingers, especially when stressed, eats with her fingers if given the chance too, partly because she still struggles with knife and fork though.

I think a few things in last posts would be good to mention.

A few things alone is just quirky ( my eldest hated feet and unplanned trips) but with all your saying in addition they are more likely to listen

My toddler didn't walk or talk at 18 months. No big deal. But with the fact he never engaged with toys or any activity. He mouthed then discarded all objects. The three things together was a red flag and we was seen very very fast.

I hope it's nothing. But when your concerned you should never ignore those doubts. Let the pead tell you it's something and nothing.

If your dc is not happy, then it is worth looking at what can be done to make life better.

I don't know what the other geese ie posters on this board think, but is there any point in getting eg a sensory-OT assessment before a psychiatrist diagnosis?

Not sure about other areas but here it's all done under a peadiatrition ( hope I spelt that right). They then fire off referrals and take lead in diagnosis

Well, for what’s worth (and I’m only a parent not an expert, though I’ve met lots of kids with ASCs through DS’s social skills group etc) you do have good reasons to be concerned. It’s the social and communication things that make me think so, the way she needs things to be on her terms. And the sensory stuff. And the behaviour issues too, though they could be caused by many different things.

Round here also your GP would probably refer you to a paediatritian who would take the history (the kinds of things you’ve said here), plus talk to you and your DD and run some tests, then refer to all the different specialists depending on what the main issues seem to be (e.g. maybe SALT for communication, OT for sensory, clinical psychologist for whatever they do.) My DS has never seen a psychiatrist - I think psychiatrists mainly deal with medication and my DS doesn’t have any medication.

And I wasn’t really aware of this but I soon learned that SALTs deal with a lot more than just speech problems - specialist SALTs also do social skills and non-verbal communication and “pragmatics” which is knowing what to say, when to say it and how to express it. It was the SALT who really nailed my DS’s deep inability to communicate properly even though he could chat away nineteen to the dozen.

So yes, I second the idea of simply making a list out of what you’ve said here and taking it along to your GP. You may have to go on a long waiting list to see the paediatritian though. We were on a six-month waiting list even though my DS was thumping adults in school . Oh, and your GP may suggest you go on a parenting course meanwhile. I found this a patronising suggestion and sometimes the courses are not much use but in fact I got a lot of support from mine. People did understand that I was trying to deal with something out of the usual. It was also kind of reassuring to hear about what some of the “normal” kids got up to and think “blimey well at least it never crossed DS’s mind to do that”

I know it isn't easy. But it's worth getting this checked out. In the long run it will be good for your DD.

So after the nightmare on Wednesday, yesterday actually was a near perfect day. See that's what happens and I start to think I'm crazy/just a bad parent. OK so a few issues when I asked DD to do music practise, but after I walked away, I heard her practise both anyway! Also she was doing her 'bag thing' where she collects different objects (seemingly random to me) and puts them in a bag, then hides it (in a wardrobe/behind sofa/hung on bedroom door) and starts another. It drives me mad as we can never find things in this house (she doesn't remember what she collected or where it went later) but I could live with it if it that was the only problem.
Thursday is also a relatively quiet ( numbers of children and volume wise) day at the club, so DD was completely happy there yesterday. She played exclusively with the girl she idolises for 3 happy hours! I watched a bit and she will even let this girl be in control of the game at times, so she can do it, just on her terms I guess.

Now this morning already we have had problems again but not too bad really. first of all a new screeching noise has appeared, in response to anything she doesn't seem to like. Then when I put a DVD on just now, DD goes and sits on the unit in front of the TV. DS (sitting on sofa) can't see so asks DD to move, she goes over and hits him on the head then back to her perch on the unit as if nothing happened. I intervened and moved DD back off, she starts screaming and trying to hit me too. as soon as I let go she goes back onto the unit, so now she has been taken to her bedroom (not allowed DVD now as punishment for hitting) but is crying loudly, shouting how I hate her/ I should get rid of her/ she is stupid.

I am trying to get a list together to take to the GP. If he suggests parenting classes though I will back down probably. I've been there and done that and it did not help at all. Also I looked up the diagnosis pathway for my area last night. It seems very long and drawn out with average waiting times around 2 years!!!

Would trying to go private be any quicker? and how much would the total cost be? I'm assuming as long as you can afford to pay, there is no need to convince anyone to refer, they just do the assessment and you get the yes/no answer. Am I right or is it just as hard? I don't have much money but I'd rather max the credit cards/get a loan/eat beans on toast for months than wait another 2 years or just get told I'm a bad mother again.

If you go private do that alongside nhs. You need to find a person that no one will refute ( a nhs doctor who does private on the side or a well known expert in their field)

It will cut your wait, but make sure it's a irrefutable person

Someone will be along to advise. Daphne keen is a private nhs doc in London. Costs about £750 but you may need reports for her to look at.

If you’ve already done parenting workshops then sure, there’s not much point doing them again (though a nice leader can be very supportive!) I just wanted to make the point that suggesting parenting workshops doesn’t mean they think you’re the source of the problem.

I also have the experience of good days / bad days. DS has been diagnosed for 10 years now and I stillhave days when I think “maybe we have been making a fuss over nothing” and other days when I think “how could I ever have thought he was like other kids?” How he reacts to the same situation does depend on a lot of different factors, including his own mood.

Rigby, ignore what I said, turns out my daughter has (very politely), been walking up to the other little girl, every day, and saying "excuse me, I don't want to play with you today". Not quite the desired result.
Poor girl, I must apologise to her mother.
Social skills classes here we come.