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

[FrayedHem]

You need a SALT to assess his communication skills. Again it varies from area to area so I would go back and check it isn't just an assessment of the speech sounds.

Assessing communication skills will likely look at his ability to follow instructions, attention span to games, conversation skills (can he maintain back and forth/length of sentences), understanding of more abstract concepts, as well as checking on his vocabulary.

Have a look at this website talkingpoint. There is a progress checker but it's only a guide and nothing replaces a proper assessment

[FrayedHem]

Again it varies, but the SALT may want to observe him at home &/or Preschool. You should get advice on how to help extend his skills both for preschool and home.

[VforVienetta]

I agree with the above, that the signs are pointing towards an ASD of some kind.

My DS is just starting the assessment process now, he's nearly 6, and I first raised concerns with our (lovely) GP when he was 3.
Our whole house revolves around DS and his needs/moods, it's exhausting, and unsustainable.
I don't think a diagnosis will get him any official help, but it will help us understand and parent him better, so that he can hopefully develop into a happy and rounded person.
If he carries on like now we're in for a hard time.

Defo think you need to organise your concerns, and present them firmly.
In hindsight I was too wishy-washy and trusting, I should have pushed harder when he was younger.

[ChrisYoungFuckingRocks]

In my DDs case I was concerned because she speaks very unclearly - I often can't understand her, and tell her to 'pronounce your words' on a daily basis. The SALT observed her at school, in the classroom, twice. I received a letter stating that they had no concerns about her communication! I was hoping for some SALT sessions, but now I'm looking into getting her elocution lessons perhaps. Not to be snobby, but just to be able to understand her when she speaks lol.

Vienetta - I think you'll find a diagnosis will help. If your DS is diagnosed with ASD, he will fall under the SENCO. If your school has a sensory room, he will have access to it. My DTDs school also have various nurture groups and sessions to work on their flexibility and motor skills. All of which they don't have access to without a diagnosis. DTD2 is very jealous because she doesn't get to go to the groups or sensory room .

[goingmadagain]

Just also had a google about taking sertraline when pregnant, increases the risk of a child having asd ☹️
I am on it and was on it when I had the boys (dc2 &3) Fucks sake. Think I need to step away from google 😣

[Frazzled2207]

Oh golly don't beat yourself up. Not your fault.
I have no experience of asd but just to say my son is exactly same age and whereas he does display some of the same things as your ds in your situation I would be pushing for an asd referral asap as you want to know if there's an issue before he starts school. Don't think it's good enough of gp to wait for hearing test first. We went through the SALT referral with ours and they were helpful so whatever happens worth waiting for that.

[kingsleysbootlicker]

You said that the paediatrician was more interested in his blood test results... do you know what tests were done and what the results were? Did they check his B12? B12 deficiency can cause autism type traits and can be caused by medications including Sertraline (and be passed from mother to unborn child)

[anotherdayanothersquabble]

The ventolin response is significant in my opinion. My son is NT but on ventolin he started head banging, counting rapidly to 100 (he was 4 years old, not normal behaviour for him), he couldn't stop talking, he was incredibly agitated, he was upset, I asked him how he coped at school being quiet and doing what the teacher told him, he burst jnto tears and said it's really hard Mummy and I just can't keep it in any longer. I believe that there is an extreme reaction to ventolin that does appear in some children (possibly with other issues... DS has allergies and food intolerances that do all sorts of things to his energy levels, agitation, highs and lows, he follows the GAPS diet broadly and eats very little sugar). The pediatrician that he saw said that the amount of active ingredient in ventolin could not have caused the changes we saw, and yet that is what happened. With the help of my pediatrician, his asthma is controlled without drugs, except maybe once a year when he comes in contact with an allergen that I cannot control but these are becoming less frequent.

I know the ventolin is only a part of the picture but I wanted to share that I too have seen a 'non normal' reaction to Ventolin and quite frankly it terrified me.

[giraffesarefab]

Google is not your friend here.
It sounds like you have made the right steps, my most important piece of advice is to write everything down - everything!!! Get a diary or notepad and a folder, everyone you speak to either over the phone or face to face, write it down, times, dates, reason for contact, outcome of conversation, any follow ups?
Every piece of paper you receive, letters, appointments, reports etc, keep them together. You will need all this information many many times (just wait for the form filling to begin!)
Contact your local council and ask them if you have a local CDC (child development centre) or similar - this will become your second home - this is where all the assessments will take place (apart from hospital stuff like hearing, sight, paediatrics etc) look on fb for any local parent forum, there may well be a drop in session where you can discuss your worries with someone. CAMHS (child and adolescent mental health service) are helpful but overstretched but keep pushing.
If you would like any more help, feel free to pm me.

[akaWisey]

I don't know where you live in the UK (presumably) but I can tell you that in Kent children under 11 are assessed for ASD by the community paediatrician and NOT CAMHS. If you're in Kent you would be wasting valuable time asking for a referral to CAMHS, who would signpost straight to comm paeds.

He sounds like he might be on the spectrum though.

[BackforGood]

Different areas of the country have different processes.
CAMHS would not be involved in assessing for Autism here, you would go to the CDC (Child Development Centre) for a MDA (Multi-disciplinary- assessment), for example.

SaLTs are crucial - they can do a full assessment of his use of language and understanding of language. That will be very relevant in any diagnosis (if you are thinking it is Autism).

Obviously none of us can diagnose, but so much of what you have listed sounds typical of a child with Autism.

Waiting lists are everywhere - I was thinking "only 18 weeks" for a SaLT assessment - that would be nice

I don't know how a pre-school can "opt out" of referrals - they have duties and responsibilities. They should have an Inclusion Officer or Area SENCo or same person by a different name to advise them if they are unsure.

I'd go to the GP (or get back in touch with the Paediatrician?) and ask how you get an assessment to see if he has autism of not, in your area.

[goingmadagain]

kingsleysbootlicker
He had blood tests done last year for loose stools and wanting to constantly drink, as well as poor weight gain.
He was tested for the following:
April Last Year:
Urine - Osmolality (772.0 mosmol/kg)
Thyroid Stimulating Hormone - Serum (0.56 mu/L)
Free T4 - Serum (14.0 pmol/L)
Sodium - (136.0 mmol/L)
Potassium (4.6 mmol/L)
Chloride (103.0 mmol/L)
Creatinine (45.0 umol/L)
Urea (4.3 mmol/L)
Glucose Serum (3.9 mmol/L)
IgA TTG (0.3 U/ml)
January last year:
Serum Sodium Level (137 mmol/L)
Serum Potassium Level (4.2 mmol/L)
Serum Chloride Level (105 mmol/L)
Serum Creatinine Level (43 umol/L)
Serum Albumin level (39 g/L)
Serum total bilirubin level (

[akaWisey]

OP, why don't you ring your local CAMHS service and ask to speak to the duty clinician and they will give you the definitive answer to the 'which service will do the ADOS for my child' .

I think your local camhs might be the same NHSVtrust as the one I know very well in Kent but because it's a different county there might be different local arrangements for ASD so I strongly recommend you to do as I suggest. Good luck.