Whoohoo, just got my son diagnosed!! Aged 19!

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TODAY I got the letter I had been waiting for years for! Finally my 19yr old is OFFICIALLY on the spectrum with a diagnosis of ADD! Phew it has taken long enough but finally we are there!

So now ALL of us are OFFICIALLY DIAGNOSED, gosh I feel it has been the most complicated journey of my life. Me and the FIVE children, yes all mine!

One thing I have noticed here in the UK anyway is this.

Children that are not picked up within the first 10yrs are in danger of being missed altogether. What happens to the older kids and young adults? The support and provision just STOPS when they hit secondary school age of 11. It is shocking what I am discovering about the system here in the UK. So horrified that I think it warrants another thread.

But for my 19yr old, it has been appointment after appointment, trawling from one doctor to another in search of the vital letters ADD.

My son was under the Child dept for 3yrs until he was referred to Adults 3yrs ago. In that time he has been to 6 appointments for nothing. Finally the Adult Pscychiatrist says " Sorry I am not familiar with ASC so will refer you back to the kids department"

8weeks later I was walking my 6ft 5 son into the childrens waiting room! What a shambolic mess and what an embarrasement to the services here in the UK.

For those of you around the world, I want you to to know that the UK is TERRIBLE for those of us on the Spectrum. Especially the ADD and ADHD'S, we are treated like outcasts. The National Autistic Society don't really want to know us and the other societies treat us like lepers.

Is there anywhere in the world that we are actually welcomed? Certainly not the UK! Although from today's letter maybe there is hope!

Sorry rant over! time ticking here in the UK so I will say night night!

Well to put it bluntly ADD (Attention deficit disorder unless ADD means somthing different in the UK) is not a really a spectrum diagnosis and spectrum individuals who get this are likely being miss-categorized. The mainstream clinical community has just not realized this yet. It should really be called EFD (executive function differential). These individuals can demonstrate attention just fine, just not in the standard NT linear fashion. For the most part it bores the heck out of them. Provide an interesting visual based source and they can “attend” just find if they find the information interesting. In fact they can hyper focus way beyond the capabilities of most NTs. Unless they have hyperactivity issues (and not the misinterpreted theatrical play which is common for spectrum individuals) then they are just on the spectrum with EF issues.


bookwormde

Thanks for the comments.

I have to disagree with many I am afraid. We got a diagnosis of ADD because that was the OPINION of the doctor. Underlying my son's ADD is autism. I can see it BUT because he is 19 he gets no executive function testing? Out of school, missed throughout school and we get the doors shut in our faces.

I am SICK to death of people NOT classifying ADD or ADHD as on the spectrum. See yet again we get chucked away BUT problem is NOONE in the UK is looking at SPECTRUM CONDITONS as a whole. They keep separating it. There is NO such thing as PURE ADHD/ADD/Aspergers/Autism. I have one son who is Aspergers/ADD, so thanks very much the NAS want to know him. I have another who is DAMP/Epilepsy................NAS are not interested yet he has tics, sensory issues, OCD, SAD, SID and CAPD. But my son who is autistic with ADHD is welcomed? AND then there is the PDD(nos), not bothered about him really! Even the local charity we have specialising in Aspergers don't want to know! WHY? Coz we are broke!

Then there is this last one who I know is underlying Autism but because he was the quieter one of the five he got overlooked at school. It was bad enough getting the other 4 diagnosed! So the quiet struggler gets overlooked. Ooh by the way he has SID, SAD, CAPD also. He cannot remember what happened 5mins ago, can hardly string a sentence together and been in and out of work more times than I can remember.

And then there is the ODD and CD? What is that then? Does anyone want to know then? Answer in my experience is NO.

NAS in MY opinion are rubbish. They discriminate, choose and pay fat cat salaries to their staff who just dither most of the time. Apologies to anyone who has had good treatment from the NAS. I work with a lot of mums here in the UK, not one of them can speak well of them. Even someone I know that was on a comittee. So sorry if that sounds harsh. I am just speaking from MY experience.

SPECTRUM? Who cares who is allowed on it and who is not. We are all experiencing very similar problems only different. To be ousted by a national organisiation and MADE to feel like outcasts is not helpful.

Why do we need a DX if we feel like outcasts? Mmmm well because then we are self empowered to be able to understand and communicate our weakness so that others may understand us too Duh!

Maybe we should have a thread on organisations within the world that we find helpful and those that we don't. About time we knew as the public what our charitable donations bought.

All I am seeing in flashy conferences with extortionate pricing, exectutives driving around in 4x4's and business class travel for what? Meetings. They are ALWAYS in meetings!! aAAAAGHHHHHH

Bring it on, love the debate. I do feel strongly about this as I am sure many of you do too. I hope we can have a heated but POLITE debate over this! How many feathers have I ruffled now.

Trouble is folks for people like me on very low incomes these organisations offer us NO help IMO!

Just so you understand I am not saying that your child is not on the spectrum just that he has an EF differential not an attention deficit, he just attends differently. Most clinicians have not figured this out yet. A highly experienced clinician would be able to “see” that he is Aspergers and not just settle for the ADD diagnoses, which will not give him the breadth of supports that are available or to allow him the understanding of his extra abilities.

Find a clinician who is highly experience and has a lot of current training in Aspergers who has a major portion of their clinical practice involving spectrum children so you can get the proper classification instead of the alphabet soup diagnosis that you get from less competent clinicians

I do not know what Aspergers parents support groups you have in your area but we have lots of parents join ours who’s children do not have a formal Aspergers diagnosis but instead have a alphabet soup set of diagnosis from well meaning bet less than fully competent clinicians. We “help" them get the resources and support they need to get an appropriate diagnosis for their children.

bookwormde

Thanks bookwormde!
Please don't take anything personally. I am on a short fuse today and just FUMING that the doctors ARE SOOOOO STUPID!

Q. Find a clinician who is highly experience and has a lot of current training in Aspergers who has a major portion of their clinical practice involving spectrum children so you can get the proper classification instead of the alphabet soup diagnosis that you get from less competent clinicians

NOOOOOOOOOOOOOOOOOOOOO! Don't want a clinician who has Aspergers expertise!! ! I want a clinican who is experienced in teh WHOLE SPECTRUM without using these alphabet soup classifications! I cannot stand all these labels! WHO cares who has what and how much of! Stuff it we are all the same but different!

Support groups!? I run one! I know the system here inside out and back. Trust me I really doooo know the UK system. We too help ALL kids, irrespective of their diagnosis or not diagnosis. We do not discriminate like the national organisations do. You need a damm badge with ASPERGERS or AUTISM on it to get into the NAS. If you aint its tough!

I have met our local NAS Chairman! Aaaghhhh, her son is autistic low function! So he gets LOADS OF HELP and she thinks that ALL of us are like that?? And if we aint its tough! She is the most obnoxous woman who looks down her nose at everyone else. totally autistic herself but would NEVER admit to it! You know the ones!???

It is the HIGH function and I hate to say HIGH function that get missed, left out and abandoned. I am ADHD diagnosed but with underlying Autism. Sadly my ADHD drowns out the autism so noone sees that bit! I do!

But it should not be left up to support groups such as ours Bookwormde to be saving these kids lives when a lot of money is being eaten up with WHAT??? We don't see any sight of it!

The NSPCC is another one in MY opinion who get money for old rope! I wouldn't give a penny piece to them. They have no IDEA about ASC and spend tons of time and money trying to drag these kids away from there parents blaming it on parental abuse! Grrrrrrrrr

To be on the Spectrum in the UK is a hard. We need to be ploughing money into training folk into looking into the spectrum as whole! Am I ranting!!??

It certainly sounds like it is a little tougher over there, we have a large percentage of clinician and educators who still “do not get it” but once “educated” we do have the federal standards to allow them to help.

It is a shame that we need labels but that just seems to be the bureaucratic mentality.

Since Aspergers is the most subtly complicated and difficult portion of the spectrum to diagnosis most clinicians who are experience in this area know all of the different components of the spectrum differentials for all levels except for the non-verbal portion.

I am an aspie also and it is frustration because the typical “treatments” for ADHD and ADD are often contraindicated for spectrum individuals and with this labeling they rarely get the proper level of EF supports or the understanding that their processing is based on neurovariant “wiring”.

Do not worry as an aspie I am not easily offended.


bookwormde

ADD/ADHD are not on the spectrum of autism sure it is a disability but it is different. I actually have both AS and ADD but usually only tell people about the AS the ADD makes me talk a lot I am very talkative and tend to get bored easily.