My son is going for an initial assessment on Tuesday with the school Dr. We have not been told what will happen or what to expect and to be honest I’m Shitting it.
We have a very lovely boy but at times he finds some things difficult and can be quite challenging. Any changes to routine, plans, certain clothes, certain foods, environments can send him on panic attacks and mellt downs. Sometimes to the point of hallucinations and vomiting. He also either generates a very loud strange sound and can not communicate. Due to the volume with the sounds, we have had the police come to the house, someone stop us in the street, who thought we were kidnapping him, and someone contact social services. All have been cleared but he does suffer when he goes through these melt downs.
my concern is, what do we expect from the initial meeting? We have been told it may tale up to 36 months to get any diagnosis, if there is one. We have heard mixed views on the ability of the school Dr, cut backs and staffing et cetera.
I am fearful nothing will get resolved on Tuesday or we will be told to wait. That will not help a child now which at times is very distressed.
Has anyone here gone for a private assessment and how did they get on?
apologies for the ramble.
Not really addressing your specific questions here sorry, but saw a program (possibly bbc4?) called the woman who thinks like a cow. Its about deep pressure therapy and autism. One acessible way to see if it helped is a weighted blanket.
You don't say how old your son is, the assessment will depend on that.For the initial assessment the Dr should talk to you and your son. You should describe the problems he has been having, and the Dr will likely ask your son about them. From there you should demand a referral for a full assessment. The full assessment will likely be done by a pediatric psychiatrist. For a younger child involves playing with toys and looking at picture books, some questioning and some observation. They have a long checklist to come up with an overall score. Full details here https://www.autism.org.uk/about/diagnosis/children.aspx?gclid=EAIaIQobChMIpZK2kPX12wIVip3tCh3jxwrkEAAYASABEgImHvD_BwE
Hopefully, you will have a positive experience that allows your son and your family to get the help and guidance they need.
I'd suggest you start looking into autism support resources regardless of the outcome of the assessment.
Can't tell you how the assessment process works as it was all fairly invisible to me as a kid, I just remember having to meet a doctor at school and being asked a lot of questions.
Hopefully the level of support and understanding from schools has moved on in the last 20 years as the "put him in a room with the other special kids" approach never seemed very helpful.
He is 11 years old. His head is one of the instigators of this, and so has been very supportive. His form teacher and head have filed out questionnaires as well as my son and both parents. I will check the links, thank you.
I spent a long time working in Autism (for awhile wit the National Autistic Society so have some background. There isn't a 'fix', so don't go in expecting one. It is useful to understand wh ythings happen and get to t alk to people who know, but primarily it is about understanding who your son is and what makes him tick.
It is not a quick procress and is a bit subjective. Some people find a 'label' of ASD helps them access the right support and others feel it becomes a burden, but my view is that it is always good to have as much knowledge as you can.
I'm not totally sure on the current process for assessment of children, for adult assessment a clinical psychologist specialised in Autism and a psychiatrist will be making the assessment. The first meeting will just be a screening to see whether your son should be put forward for a full assessment. Waiting list are unfortunately growing and services are being cut in many areas.
The assessment service varies massively by area, some good, some poor, some non-existant. You have rights under the Autism Act 2009 and under NHS rules you can request treatment where ever you choose, although this will require funding approval from your area. If the service in your area is poor or missing then I suggest you look at a referral to either South London and Maudsley or the Lorna Wing Centre run by NAS.
It does sound like Autism to me. Sensory sensitivity issues are very common with the condition. This can be reduced to some extent but the only real solution for someone in crisis is to avoid the stimuli. A lot of the things that bothered me as a child only became clear much later in life with hindsight. If you are still trying to figure out what causes the problems for him, I suggest you try and keep a diary of what happened and where the meltdowns occurred and try to recount the situations when you have a spare minute, it may help to figure out what to avoid.
Private assessments also vary, so do some research before going down this route and make sure that a positive diagnosis from this person would be accepted by Schools, NHS and government agencies. Obviously waiting times will be reduced, I think the cost for private will be at least £2K.
While I say it sounds like Autism to me in the previous post that is just a gut feeling from the little information you have given, he may have other conditions that provide similar effects.
I would also suggest you make some notes for the meeting on Tuesday if you have not done so already. List all the issues that he is having problems with. It may make depressing reading but will make sure that nothing gets missed out.
These pages may help you:
https://www.nhs.uk/conditions/autism/symptoms/
https://www.autism.org.uk/about/diagnosis/criteria-changes.aspx##criteria
I got assessed for asperger /asd and diagnosed privately in London for about £1250.Although this was 10 years ago. Didn't have to wait at all.Look for Dr Sheldon at Harley Street or The Priory in North London. He's an expert and can also assess other problems too that may be assoicated with asd. Often people might have a slight disability in other areas too associated with asd or asperger.
I would strongly advise him as he is very quick, insightful professional and understanding.
https://finder.bupa.co.uk/Consultant/view/20698/dr_laurence_sheldon
nothing will get resolved on Tuesday
Mainly this.
For your child to access additional support they will need to be first diagnosed with SEN and then an EHCP will be put in place. This is not a quick process (rightly, imo, these are often complex issues that require multi-agency and parental involvement).
Your main aim should be to get what you believe your child needs into the EHCP (additional support, one to one, whatever) - if it's not in the EHCP it won't be provided as schools don't have the budget.
Be flexible too, though, don't just insist on sticking with what you have as far as schooling goes look at what other offerings the LA has - some ASD children cannot cope in a 'standard' classroom setting as there's too much going on and flourish if put into an environment with fewer children, more structure etc. But it's different for everyone.
I hope all goes well and you as a family come out of this process feeling you've achieved the best for your child and that your son is happy in his schooling.
Just to add - a diagnosis really achieves nothing. There's move away from even trying to diagnose ASD - it's such a broad range of issues and presents so differently from person to person. The key is to establish that your child has Special Needs (which can be difficult for parents to accept in itself) and then get the EHCP in place that addresses his exact circumstances.
Don;t get hung up on the ASD thing - it's nothing but a label, not a solution.
You'll probably find the High School is quite clued up, compared say to Primary Schools. My son was diagnosed with Type 1 about 4 years ago, and the school were upto speed with all SEN issues.
It's not a quick process but they are there to help, so don't worry. Make sure you make notes before hand. I assume the school has picked this up, which is good. These things aren't always picked up in Primary - certainly in my experience.
You can also go via your own GP for referrals.
I found it to be a massive weight off my mind when I was diagnosed and has helped alot in my self development. I did not get assessed until later in life, although I've struggled in certain areas alot and did not know what was different about me for years. Best thing I've ever done and I should imagine it allows for action to be taken with schools etc. No idea if you need a registered diagnosis or not for 'the system', The NAS has a good support line. The condition can vary lot though and in my experience can change over years, so your children may adapt as they get older and function much better.
Thanks for the replies.
I think my son needs a diagnosis of some description as whatever is bothering him can be very isolating. He doesn’t always understand why he struggles with some things his friends can take for granted. He gets quite hurt when he come across quite rude, when that is not what he means. In return he sometimes has trouble reading what others mean, either with facial expressions or tone of voice. If he could relate these behaviours to something other than a “personal failing”, which I think is how he sometimes see it, I hope he will be better positioned to accept himself. We are not looking for a cure. Just a clearer understand for us as parents, for him and others who occasionallly find his “quirkiness” or occasional “difficultness” a bit challenging.
I wasn't suggesting not getting a 'diagnosis' as such just that 'ASD' really tells the people who woudl need to decide what help to provide very little about what your child in particular will need. The EHCP is the thing that will determine what support is given (and is also a vehicle for ensuring appropriate funding is in place, in some cases).
Sorry wwaswas, my last post wasn’t aim specifically at you, more of a comment as how we see it. All information from posters on here have been helpful including yours.
apologies if I appeared to overeact too, I just think your focus needs to be on obtaining the support your child needs rather than an elusive 'diagnosis' that will some provide all the answers - it's likley to just be a gateway to a more complex process of convincing the school and other professionals what's needed. My wife's executive head of two special needs schools so I tend to get a lot of 'background' information about current government, medical and council policies in this area over the dinner table 🙂
My son has had the initial assessment. The Dr said she thinks he has ASD and has recommended he go for a multidisciplinary assessment. He was fantastic and we were very proud of how he handled it all. The Dr was very patient and thorough and we were there for about an hour and a half. We have been told we should get an appointment in 2 to 3 months time. We are considering going for a recognised private assessment but only if all the bodies involved will recognise anprivate diagnosis. We hope that the quicker we can get a finger on it, the smoother transition to secondary school and less stress for him in general.