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To push for a "diagnosis"

(66 Posts)
goingmadagain Sun 19-Mar-17 19:05:40

Hey guys,
I have name changed for this, for fear of outing myself.
My DP and I have 3 children, and it is our middle one, who is causing me concern.
He is 3 years and 9 months old. I dont even know how to start this really.
He has always had me worried. He is on the go and has been ever since he could walk, which I know is "normal".
Right here goes, these are his "Issues":

Slaps his head (not frustrated or upset or excited)
Is extremely hyper
Has no fear of getting hurt
Jumps off sofas, toy boxes, anything high
Doesn't make eye contact easily
Always says pardon when talking to him
Repeatedly says carers name, even if carer has answered with 'yes' multiple times
Zones out
Doesn't appear to be listening at various times
Interrupts
Doesn't understand patience
Gags on various foods (mainly potato)
Won't touch certain foods
Only eats certain foods
Has more hyper episodes when drinking certain squashes
Goes even more hyper if on blue inhaler (ventolin)
Doesn't appear to listen unless you have him facing towards you, even then it is hit and miss
Doesn't cope with certain noises (brother crying, happy birthdays, clapping) either holds ears or screams Ahh.
Very poor sleeper
Doesn't respond well to authority
Gets angry when gets told no
Will hide if cross and go 'Baa' (in a high pitch) at you
Will hit if cross
Will throw toys if cross or upset
Does not cope well with sitting still
Always on the go
Does girly hand movements
Does not make friends easily
Does not cope very well with groups of people
Specific about which plates he uses
Scratches his head a lot
Gets frustrated easily
Does not like giving hugs

Now I know a lot say most of this is normal behaviour, but he is not. Call it want you want, but I know that my son is not "the norm"
There i said it. And it has taken me a long time to get to this point.
I am at my wits end. I have spoken to my HV, he has had blood tests, he has seen the Paediatrician for poor weight gain, and everyone says 'typical boy'. He is not a bloody typical boy, i would go as far as saying he is manic most of the time.
I have sent our doctor a letter advising that I would like his hearing tested (Pre-School mentioned this) and i would like him referred to have his mental health assessed, do you even call it that with kids??
I just dont know what to do anymore. Am I allowed to push for an assessment? Has anyone dealt with any of the stuff listed above? Am I going mad? How on earth do doctors decide what is wrong?
And then if they do ascertain that there is something not quite right, what will they actually do? Just at my wits end, please help x

HarlotLipstick Sun 19-Mar-17 19:17:53

Has HV been through developmental milestones etc with you? Did they do a 2 year check? Did you describe all of this to the paediatrician? Really difficult to not say snap judgement when reading this as I don't think diagnosing via forum is very helpful!? But I would think paediatrician or health visitor rather than mental health. Diagnosis might be beneficial if there is one to be had but teaching coping strategies for some of these may be a good first step. (Ps I Work with Sen in 3-9 yrs)

Sherlock35 Sun 19-Mar-17 19:50:19

Push to get him seen by a paediatrician and assessed. Be prepared to be told to attend parenting classes etc...

juls1888 Sun 19-Mar-17 20:03:01

A lot of the points you have listed suggest ASD. My son who has just turned 3 is undergoing diagnosis for autism at the moment and does a lot of these things you mention.

grannytomine Sun 19-Mar-17 20:13:41

If you feel a diagnosis will help, in any way, then I would say go for it. Even if you don't get any practical help it might help you to know what is going on. It might be nothing, I have 3 boys and one was a nightmare at this age but he grew out of it and is a very nice adult so it might just be a wait and see thing.

I hope you are OK, I know that having one like this can be so difficult.

goingmadagain Sun 19-Mar-17 20:13:44

Thanks guys, it does appear that it is me going mad 😞
He has had the HV checks, and if I remember rightly, he was not on target for talking and fine motor skills. These have been re assessed by HV and he is more or less there now.

The paediatrician was more interested in his blood test results, which was fair enough. The HV mainly says, he is a boy. Which of course i know!!
Does this indicate our parenting is crap? The thing is tho, our other two are not like him at all. Surely they would all be as hard work, if we were bad at parenting?

I suppose I am trying to work out what assessments actually get done, and how they go about getting a diagnosis (if there is one to be had) x

ninanutella Sun 19-Mar-17 20:21:34

try to see with an OT if it's not sensory processing disorder. You will have to go private as the NHS doesn't do it but it all seems to revolve around sensory issues

Secondtimesally Sun 19-Mar-17 20:23:05

I echo pp Juls - sounds like ASD and/or Sensory Processing issues. Have been reading a lot since DS1 started on the autism diagnosis route (took 2 years starting when he was at nursery). DS2 (2.6) has his assessment at the end of the month but has different symptoms to DS1. I suggest you ask the GP for a referral to an Occupational Therapist for his sensory issues re noise, food etc to start with. That alone made a massive difference to DS1's transition to Reception. He has special play dough and toys to fiddle with, is allowed stand during carpet time, gets special exercises during little break, and that is all helping him learn. Paediatrician is needed to diagnose ASD/ADHD etc and will need evidence from OT, speech and language etc.

MoonriseKingdom Sun 19-Mar-17 20:23:47

You mention pre school - what do they say about his behaviour. They may have some clout with getting CAMHS involved if they feel there is a problem.

outnumbered4 Sun 19-Mar-17 20:23:53

He sounds very similar to my younger ds, he was recently diagnosed with ADHD and ASD. It's a long drawn out process unfortunately, does he go to a preschool or nursery?

Secondtimesally Sun 19-Mar-17 20:24:35

We saw the OT and SLT via counci-run children's services (Richmond upon Thames) but probably varies by area.

AbbieLexie Sun 19-Mar-17 20:25:40

Insist on CAMHS referral for assessment. Trust your instincts. Make sure you have a paper trail.

mygorgeousmilo Sun 19-Mar-17 20:30:41

Ask for an autism assessment. My son has autism and started with these symptoms. I have other children and know other children, this isn't 'normal' behaviour. I would start looking up autism as I found that helping my son before diagnosis was really helpful to all of us, especially him. It won't effect the diagnosis as the signs will still be there.

Katie0705 Sun 19-Mar-17 20:30:45

Definitely get a referral to a paediatrition. Very difficult at 3 years to determine what is the norm or not. The one thing I would want to discuss with the paediatrition is the possibility of autism. You are not going mad, you are a very caring mum.

thatsthewayitgoes Sun 19-Mar-17 20:39:04

My DD has just been diagnosed with ASD. You don't necessarily get any extra help but at least you and your child will know. That counts for so much. X

goingmadagain Sun 19-Mar-17 21:09:28

Thanks guys. Pre School and Childminder both have mentioned issues. Pre School he only started a year ago and he has never liked it. As in he doesnt want to go. Once he is there, he seems ok, but still not his favourite place to be. We have persevered with it, as he starts school in September and the childminder advised (as well as HV) that he needs to get used to groups and multiple teachers, otherwise he wont cope in school. Pre School say he needs his hearing tested (which I have asked docs to refer us to) as he doesn't seem to listen and is in his own world most of the time. He also tends to play on his own and his Key Worker has also mentioned that he does things his way, i.e. She asked him to thread a button, but instead he told her the shape of it and how many holes it had.
Childminder we have been very lucky with. He has been one to one with her for ages, our youngest (his brother) is there now too, which all seems to be going ok. He does adore his brother. Not so much his oldest sibling tho.
Childminder and I have had discussion at length about him, and yes she agrees that he has his "quirks", but on the other hand he gets a lot of one on one time with her, and therefore flourishes.

Thank you guys all for your comments. Feel like I am very lost with the whole situation and not coping with keeping him under control x

deadpool99 Sun 19-Mar-17 21:33:58

OP,
based on your observations I agree that it's worth asking for autism assessment with a Behavioural Paediatrian. Needs to be a referral to a behavioural paediatrician that has experience in autism, not a general paediatrician.
Trust your gut. You are probably right. You will have lots of people who will tell you that your DC is ok and this is normal behaviour (this happened to me too), but after several years my DC finally got a diagnosis.
If you can, it's worth seeing a private OT to help your DC with strategies for the sensory stuff. It sounds like he may have auditory processing disorder. He may of course have hearing problems, or glue ear.
If you have got a special needs charity in your area they may be able to offer additional support and advice.

Secondtimesally Sun 19-Mar-17 21:52:40

The hearing test is a standard thing for all ASD assessments - needs to be ticked off before progressing speech and language issues

PotOfYoghurt Sun 19-Mar-17 22:10:36

'Girly hand movements?'

Topuptheglass Sun 19-Mar-17 22:15:02

PotOfYoghurt beat me to it...

Mumoftwinsandanother Sun 19-Mar-17 22:44:35

Hi OP, think I have a small inkling of what you are going through. One of my 3 (also the boy - now aged 4yr7mnths) now has a diagnosis of ASD (diagnosis at 3yr10months).

I was a SAHM and did not realise that there was anything particularly unusual about him. Knew he was very active, difficult to play with, delayed a bit in speech and did not always respond to his name or questions; however, the rest of the time he was so "normal" and downright lovely I was very surprised when the pre-school started questioning development. (Now I realise that I felt like that because I was 1:1 with him (like your CM) and he learned and responded so well when it was just the 2 of us, it only became more obvious in pre-school or group situations where he had to listen to the teacher).

The first stage is always a hearing test (try to get that moved along as quickly as possible). Assuming there is nothing wrong here you probably need to see a paed for a development check - insist the GP does this, explain the list of quirks. If you don't get joy with the first GP get a second opinion and push. I think the blood test is a bit of a red herring (there are potential conditions that can be ruled out but this is not the obvious thing to check - just the cheapest and I know they do this in several health authorities (especially in Scotland - lots of Scottish autistic relatives) to delay the more expensive/time-consuming ADOS.

Then you see the paed for a development check, they will write a report and may send you for an ADOS (ASD diagnostic check). Usually take quite some time to get seen for all of this. To be honest, getting a diagnosis doesn't usually confer much help by itself (OT which would be most helpful is pretty non-existent on the NHs and you may or may not qualify for SALT).. However, it will give you some understanding. The most important thing for children on the spectrum is the behaviour/understanding/willingness to make adjustments of their teachers and caregivers. There are absolutely tons of courses you can go on as a parent of a child with ASD/suspected ASD which can be very helpful. Heaps of techniques to make yours and his life go easier/to ensure that his self-esteem remains high. Support groups can also be helpful. You rarely need a diagnosis for all of this but it sometimes helps to solidify things in your mind/convince others of your veracity.
The other thing I would say, when I posted things like this 1.5yrs ago I was secretly hoping that people would say of course he doesn't have ASD. He talks well, everything is fine. Now I feel very differently, yes he does have ASD, yes he is a little different, but good different. Its not actually a bad thing at all (at least for us and appreciate others have a worse time). I still find my autistic child more lovely and loveable than all the NT children in the world. I still marvel everyday at the leaps he is making and think he is the cutest thing going . He does clearly struggle sometimes but not as much as he might as the rest of us (school and home now - our school have been good) understand him (what he is good at, what he needs extra help with and what might upset him) and spend more time planning things for him and changing the environment where appropriate (a bit not completely), He has friends, he is age-appropriate with self-help skills, he is beginning to learn to read and write and most of all he is happy. Couldn't ask for more. I hope that if your DS does have SN you may also feel like this given time and send you lots of unmumsnetty hugs in the interim period which is the most difficult time.

DarthMother Sun 19-Mar-17 23:08:25

Please don't mention "girly hand movements" when you're talking to people about your son, it will distract from actual issues.
A lot of the things you've listed ring a lot of bells with me and my child is going through an ADHD assessment currently. Ask the carers at preschool for their views and if they have concerns ask them to note them down for you. In our area you have to get a referral from the GP so maybe make an appointment to discuss your concerns.
It's really exhausting, I do feel for you.

Hawkmoth Sun 19-Mar-17 23:14:54

Sounds exactly like my boy who has just been diagnosed with ASD. It took ages. Ages. And he had a dreadful time at school because as soon as he got out of reception and had to stay in one place he couldn't cope at all.

My advice is to ask for a referral for assessment and then look on NSA website for their ABC sheet which tracks triggers and behaviour that's out of the norm. For example. Is he hand-wringing or flapping because of a change of plans or a loud noise?

My DD has just been referred and I've made a database to track all her triggers and meltdowns so that I can present them to the doctors and hopefully save some time and stress for her.

goingmadagain Mon 20-Mar-17 07:43:47

Thank you once again for all replies.
Yes girly hand movements shouldn't have been mentioned, but I am trying to make a list of all of his little quirks. Maybe I should call it hand flapping when he talks?! Something so small may (or may not) be relevant and I am by no means a technical person, therefore I didnt know how else to explain it.
I will speak to Pre-School and Childminder and get them both to make a list of things which they are concerned about.
I will also have a google (i have tried to avoid this til now) for the websites mentioned and see if we can implement some techniques, as I am not coping. In actual fact our whole family isn't coping. Everything revolves around him at the moment, and it is making life pretty hard.
School I am worried about. We find out next month which school he goes to. I very much doubt (if there is anything to be found) that we would have a full
Picture by September, but I am inclined to mention my concerns to the teachers when they come to visit.
Thank you all again, it does mean a lot x

Sunnysky2016 Mon 20-Mar-17 08:16:54

Another person here thinking something along the lines of his sensory processing/autism. I think you should go to the GP armed with a list like you have done here and she what they say.

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