To push for a "diagnosis"

[goingmadagain]

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

It's definitely worth getting him assessed if you have faith in the assessors. If you have been told by medical professionals already that this behaviour is normal but you won't accept this, will you accept it if that is the outcome of an assessment? Worth thinking about.

Sounds like my ds who has asd. He's now almost 6.

We have spent a fortune on therapy and I'd recommend occupational therapy. It changed our lives. He learnt strategies to regulate himself and recognise dysregulating situations.

I'd also recommend early intervention.

Yes hand flapping is a very good way to describe it.

We have ear defenders for DC when noise gets too much. You can get them in a kids size.

Best of luck OP.

You should be able to self-refer to Speech and Language Therapy. Some areas have drop-in clinics, others you phone or refer online. I'd get a jump on that one as it can be harder to access SALT at school age.

Although his vocabulary level may now be age expected it's possible he has difficulties with receptive language - understanding instructions like the example you gave over threading the button. He understood the object the worker was talking about, but maybe he didn’t understand the instruction part.

I have just spoken to the doctors again. They are referring him to have his hearing tested, but not yet sent the referral. They advised if that comes back normal, they will then consider referring him to camhs. Those who have gone privately, did it speed the process up? Was it very costly?
We went to our local Speech and Language drop in about a month ago and they are referring him too, but they did say there was a 12 week wait at the moment.
Think we just need to plod along with it all at the moment, so stressful 😞 x

Services vary so much from area to area, but in ours the preschool/nursery can seek advice and/or get the LA Area SENCo to come in to their setting, so it's worth asking the preschool if there are any services they can refer to.

If you haven't had any confirmation from the SALT department, I would email or ring and check that he is on the list. Also worth trying to find out what the likely wait is for the hearing test so you can diary that.

I haven't any experience of the private route, personally I would see how these referrals go and if you are not getting anywhere then investigate it further.

A lot of what you described above could be my DTD1 (8)! She was diagnosed with ASD at 5.

I absolutely would push for your DS to have an ADOS assessment. But most of all, I would advise you to listen to your gut. I knew from the moment DTD1 was born that there was something 'different' about her. I had no experience of babies before that, and yes, I obviously had DTD2 to compare with, but I just knew she was 'different'. The class teacher and the SEN teacher helped refer me to the paediatrician, as she was displaying worrying behaviour at school as well.

Chris, can you advise what behaviours dtd1 was displaying? I know we are at the start of a long journey, more so if nothing comes out of this, it is just I feel every time I have mentioned anything to anyone (be it friends, family, professionals) I always feel they dismiss everything so lightly. People aren't in our house, they don't see him all the time and that is where I feel let down, as unless someone is in our shoes, they don't know the full picture if you know what i mean?

Pre School have said they are keeping a log on his behaviours and are happy to pass them to me, they have advised that they do not do referrals, so need to go through GP.

Also I feel like I have know for a long time that he is a bit different, just worried about school in September, really don't think he will cope x

My advice is to push. Hard. But subtly so no one notices.
If not, you'll be no further on in 6 months time.
Ask childminder and pre school to make lists of issues concerns. This takes time. Do that now.

Ring hearing test, ask any cancellation, any branch locally. Get it done asap, so that this aspect won't hold you up.

Make a GP appointment. Now. Make sure you keep seeing the same one, so you get continuity. And don't be fobbed off. Don't leave their office, until you get them to agree to what you want.

Tell GP : I think child might have ASD and here are the nursery concerns ( produce lists, so she knows you are serious and not someone to be dismissed) . I'm still waiting for the hearing test but if it comes back negative, I'd like a referral to the paed ASAP, for ADOS test or similar ( use the words do she knows you are serious) and I'll come back and see you and I'd like you to do that as quickly as possible please. assuming that the the the test comes negative, this is already taken a long time I don't want it delayed any more.

You basically say the above, in a gentle way!!

Then you've sewn the seed!!

Sorry not much of substance to add but you mention issues with food (types) and drinks. Maybe you could experiment or investigate food/drink that does not produce significant reactions. This I presume would be something you can do without intervention from others and would be just one aspect towards helping.
You may of course have already done some of this yourself.

Sounds like it could be ASD. I recognise a lot from how my nephew was at that age. Are the girl like movements "fluttering" with the hands? Because that is an ASD thing too. Getting a diagnosis is difficult sonetimes. Keep on it. Children with ASD do best on a very regular and "strict" lifestyle, as in no surprises. Try to keep things the same way at the same time with the same rules.

If you see a different day coming up tell them in advance "tomorrow it is aunty betsys birthday and we will go there and say hello to all the people, have cake, will be back later for dinner and then to bed". They need more explanation and planning.

You could try the above regardless of a diagnosis. It will help a child with ASD and won't hurt a child without.

Uh sorry my first respons was for a different thread.... MN can you delete it please?

Going, my DTD1 has the following on your list:

She doesn't seem to feel pain much - she burned her tummy on a radiator when she was 3. It was so bad it blistered. She didn't even say ouch.
Says pardon when talking
Repeats herself ad nauseum. Every sodding day.
Zones out
Doesn't appear to be listening at various times - she needs time to process information, she doesn't immediately react to a request/question.
Interrupts - al the bloody time! grrrrr
Doesn't understand patience
Gags on various foods
Won't touch certain foods - sensory issues, eg 'squidgy fat' in sausages
Doesn't appear to listen unless you have him facing towards you, even then it is hit and miss - she's very visual, and takes visual cues more than auditory cues.
Doesn't cope with certain noises - she hates loud noises, and often complains about her sister breathing!
Very poor sleeper
Doesn't respond well to authority - she's OK at school, and with her dad (because she's scared of him). But with me she's very disrespectful.
Gets angry when gets told no - hates no.
Will hit if cross
Does not make friends easily - and can't understand if a friend wants to play with someone else for a change.
Does not cope very well with groups of people
Specific about which plates he uses - and what colour the plate has to be.
Scratches his head a lot - chews nails, pulls hair, picks at skin.
Gets frustrated easily

Also, she doesn't like her food mixed. Food needs to be separate on her plate and not touching. She doesn't like things like mince with veges in it, as it is food mixing. She also has pica, where she eats non-food items. She will put anything and everything into her mouth, and has been known to lie down on the pavement and lick it!

People aren't in our house, they don't see him all the time and that is where I feel let down, as unless someone is in our shoes, they don't know the full picture if you know what i mean?

I understand completely. At school she's a little angel (apart from issues with concentration and putting stuff in her mouth). She behaves with the grandparents and her dad (again, she's scared of him - long story). But with me she's impossible! Nobody, not even her dad, believes me, as they don't have to cope with it on a daily basis. Her dad refuses to accept the ADOS assessment and says it's just naughty behaviour. To be it's quite obviously NOT just naughty behaviour, but 'they' don't get to see what I see. So yes, I understand. Feel free to PM me if you want to chat. Good luck.

Also, I think (and hope) that you'll find once he's in school things might improve. SN kids tend to like structure and routine, which he will get in school. My DTD1 is extremely intelligent, and at school she can focus on learning, and so gets distracted from the social aspect of things, which she's not very good at.

I think posters above are right. If you have concerns, absolutely follow them up, but try to separate out the key concerns from things that every child has/does/will experience.

An example:
'Goes even more hyper if on blue inhaler (ventolin)' Should probably come out of your list, because it's a well known side effect of salbutamol, the drug in the blue inhaler. It dilates your blood vessels so the blood can circulate more freely, and your heart rate tends to go up and you can get a bit 'giddy'. So yes, it's true, but it's not because there is something different about your child. It's because there's an upside and a downside to every treatment.

It might be a good idea to group your list into themes as well. So it seems you have concerns with his ability to hold his attention, interaction, communication, sensory difficulties, and following adult direction.

Oblomov I like you lol. And yes I will keep at them.
Thank you for all your responses (and Chris for your comparison details)
You are all fab and I appreciate all the help x

Forgot to say in regards to the ventolin, I know you are right, I just didnt want to leave off any details that may be important. I agree Ventolin is renowned for making children hyper, But what I would say is, it makes our son uncontrollable, to the point where he endangers himself/others x

Google sensory processing and you'll find some useful checklists.

I knew from 1.5 that something was going on with my ds and I had everyone in my ear telling me I was over reacting.

He had most behaviours you listed but my overwhelming sense was he was finding the world too hard. I would cry often from the stress he put me through and I would cry because it was awful seeing my child not coping with life.

I went privately to a speech therapist (he has language delay), psychologist, pardiatrician and lastly the occupational therapist.

The OT recognized sensitivity to sound, light and movement within half an hour.

They often work in blocks of 6 or 8 sessions and I was so impressed by the results we went weekly for 6 months (I didn't want to stop and he loves it!) and will do another block later this year.

For no particular reason, I'll tell you something my ds did that baffled me... he destroyed things. Things he loved, things he wanted, things he didn't love. Give him a toy and he'd seem pleased, within minutes (if it was breakable) he broke it.

You will get through this.

I knew from when my DC was 2 or 3 that they were different, in a lot of the ways you describe, plus couldn't stand wearing certain clothes - they felt wrong, obsessive arranging of objects, collections of weird things, apparent deafness that was actually very intense focus on something else, obsession with wheels, no imaginative play (couldn't pretend that something was something else) etc etc etc.

We didn't have the hand flapping but that is fairly typical and can be a way of releasing stress. We had head banging!! On Hard floors!!!

I couldn't get a diagnosis until they were in their teens for various complicated reasons, but in the meantime I read everything I could and used strategies as if they were, and it helped a lot! When I began to understand how they might be experiencing the world I could adjust what I was expecting and how I could help. It also helps because you understand that the behaviour is not wilful naughtiness; it's a response to a world that isn't always easy to live in. I read "Aspergers Syndrome" and other things by Tony Attwood and it made a huge difference. www.tonyattwood.com.au

FWIW DC is now 23 and makes a living doing one of his obsessions, lives away from home and has a romantic relationship

I'll tell you something my ds did that baffled me... he destroyed things.

My DD does that as well! But first she'll destroy her sister's things, and then if called out about it, she'll destroy her own things.

Like I said, she is extremely intelligent, and despite being youngest in her class, is top of her class in maths, science, ICT, but she can't understand simple things, like dirty socks go in the laundry basket. She also only started walking at around 3, and talking at 4.

I have just spoken to the SALT department and they have advised he is on the list, but current wait time is 18 weeks 😳 just got to wait and see I suppose.
I think I will phone Audiology again tomorrow and see if they have his referral, as just spoken to them too and they haven't received it yet x

Sorry me again, quick question, a lot of you have spoken about SALT and seem to be quite involved. What do they actually do? As the only reason we went to our drop im session was that he can't
Pronounce "S", "V", "F" and "W" x