Diagnosed with Aspergers at the age of 39

[Huegatort]

Hi to all Carers here

Our Son who has a severe mental health problem and other health problems has just been diagnosed with Aspergers at the age of 39!

Our Son's Psychiatrist was changed over 5 years ago; he's really good, respectful and so helpful too.

After our Son had a stroke in 2015 he saw a professional from the brain injury service, alongside an OT. Due to his brain injury he then saw a Neuro Psychologist.

Within a short period and after a discussion between Psychiatrist and Neuro Psychologist our Son was asked to go for assessments for Autism. After those assessments our Son was diagnosed with Aspergers.

When we first arrived at our 1st appointment, I made clear that I knew nothing of Autism but I could only give a clear account of our Son; which I did.

We went for an appointment afterwards for a discussion and not knowing anything about Autism I was shocked and very upset when I realised so many of my Son's problems were due to Autism! I had to stop myself from crying; over all of these years he has been denied the help and support that should have been afforded to him. He has also suffered as a consequence of not knowing, bless him. I feel so sad too that I was his Mother and didn't know!

It was discussed that if our Son would have had the help/support much earlier in his life that he would have excelled in his education. He used to get bored very easily and didn't try hard to get top marks in his school work but he missed so much of school due to his problems that now I know to be Autism!

He has used the mental health services from the age of 11 and not one of the professionals he came into contact with recognised what was wrong! I feel so angry and frustrated by this!

When he was 7 he saw a child Psychologist and even he didn't recognise this either. I suppose I feel very let down for him.

I'm now trying to come to terms with this new diagnosis but it is going to take some time I expect.

Thanks so much for listening.

Kind regards

[bowlingbun]

HUGS. For 8 years I was blamed as a "bad mother" and denied help. Somehow they missed the fact that my eldest was perfectly behaved and met and exceeded all his developmental milestones.
When we went to see the head at a private special school she asked to have him with her alone for a while. Less than half an hour she said "Your son must have been brain damaged when he was born. Didn't you know?"!
Later we discovered a cover up of monumental proportions, the midwife was an unqualified student without supervision, she didn't write anything on the labour notes for 3 hours, so no chance of compensation. So much could have been avoided if only they had been honest with us from the beginning.
It will take time to adjust to this diagnosis, it's almost like a bereavement, so make sure you are kind to yourself. You were not to have known, it wasn't YOUR fault.

[MrsAverage]

(((Hugs)) Huegatort
I have a relative in his early 30s who has had diagnoses that swing back and forward between MH and Autism (Aspergers). one professional says one thing one year, A few years later another says something different. then it changes again.

Personally i think he has Aspergers but when stressed this can build (or spiral down!) into more... whether that 'more' has a name or label is immaterial. If he can be kept calm and unstressed by using Asperger techniques to prevent 'the more' then that is what we do.

What I do find useful is that there is more to learn and implement on communicating with Autism than ways of helping with MH and a lot of those communication skills do help.
For MH diagnoses we have found they just want to medicate with anti psychotic drugs which do have a bad press in the long term.
Check out the Mark Neary blogs on drugs and the effects on his son. Also they offer insights into what strategies work for them now.

Basically don't see it as negative or too late, just have a look at all diagnoses and build a tool box of skills ( and support) from both that suit your son as an individual

Autsim/Aspergers diagnoses were relatively rare when your son was a boy, many were missed. and it doesn't mean he would have had help or education back then either

xx
MrsA

[Huegatort]

Hello bowlinbun

Here you are as always, sharing your experience and offering kind, comforting and supportive words to me, I am so appreciative of your message; as I always have been of all of your replies to me.

Like your Son, our Son too was damaged at birth and my early medical records went missing from my Dr's surgery and so did the obstetric records from the hospital; how very convenient this was for the NHS!

Our Son was born in a antiquated hospital with no special baby unit, not even a Dr was available can you believe. I too mainly had a trainee to oversee the birth of our Son.

Thank you for your hugs too.

Kind regards to you

[Huegatort]

Hello MrsAverage

I want to thank you also for sharing your story. I find sharing an experience is so helpful to others for many reasons, one is that we can learn so much and also pick up on how others cope too.

Thank you also for your hugs.

Kind regards

[Garfield_1709]

Hi Huegatort,

I got my Asperger Diagnoses at 37... I had supreme difficulties at school and my mum had the same thing, being told bad mother etc when I was younger, I was "thrown" into the "trouble class" when I was younger and was placed in the "lower levels" of class because of my "disruptive nature"... I was bored and just doing things to stay occupied...

Back then, it was surprisingly easy to miss to diagnose, Aspergers Syndrome was discovered in the 1940's in only really "came to light" and being accepted in the medical world in the late 1980's...

My diagnosis got changed to High Functioning Autism when i was 38, so 2 years ago.

/hugs for you in this difficult time.

G x

[Huegatort]

Hi Garfield

Thank you for taking the time to share your story too, it really helps to know that others understand your experience, when they too have gone through the same.

The high functioning has now been dropped due to the benefits system and the DWP staff who know nothing about Autism were thinking that HIGH FUNCTIONING meant just that and people were being denied their benefits.

I find it so frustrating that people who know nothing about many ailments are allowed to decide on what level of benefit you are entitled too, despite filling out the forms and sending in evidence from the Dr and consultant. They appear to take more note of the assessor who spends between 40 mins to an hour with you and doesn't know you like your own Dr or Consultant; so very wrong!

Regards

[Garfield_1709]

Hi,

yeah it sucks, when I had my PiP assessment I was very lucky that I still had my Autistic Support Worker working with me, so she came along and interrupted most of the questions so I could understand them then told the Assessor the short-hand version of what I was saying, I was talking above the assessors knowledge level, so my Worker had to "dumb it down" for them.

I still had a Meltdown in the assessment, a panic attack and an anxiety attack, when he assessor asked "what was wrong" my support worker answered saying "its TOO much for him, don't you understand over-stimulus?" I had employ mt meditation techniques for the last 20 mintues, which meant I became a "yes" "no" answering machine... didn't help but by this point I was over my tolerance level, I'd run out of coping mechanisms and just wanted to RUN...

Luckily my Worker, was able to answer for me...

Of course, now I have nothing, no support, no meds, nothing... I manage, just about

its really horrible to know that there still people out there are not being treated correctly, APPEAL the decision and take copies of all the forms, the letters etc and do not be afraid to argue ith the assessor and ask them to read what they have written on the computer, you have a RIGHT to know what they have written, if you do not like something they have written get them to chang eit.

If you have the time, write a letter to them BEFORE the assessment elling them you are going to verbally record the assessment, somewhere in their literature it states you can do this, as long as you give notice, so then you have a voice record of the whole thing.

Hope you get a right decision. keep me updated /hugs

G x

[Gilli]

Hi Huegatort,

Don’t feel annoyed with yourself that you didn’t realize that your son had Asperger Syndrome. As Mrs Average has pointed out, an Asperger Syndrome was a rare diagnosis when your son was a child. My daughter is the same age as your son and the condition was unheard of when she was growing up. We knew something wasn’t right with her, but she wasn’t diagnosed with Asperger Syndrome until she was about 22.

Also, don’t regret not being able to do anything for your son all those years, but instead look at what can do for him now.

Gilli

[Honey Badger]

Should not take the diagnosis badly as people are affected in different ways as such display different sets/combinations of the criteria (or quirks) associated with ASD/AS. I was diagnosed late (almost by accident) in spite of being self-aware of my differences with peers growing yet not wanting the label knowing how disclosure would negatively impact my role as a carer (which started at a young age) due to stigma's associated with being on the spectrum.

I'm not anti social in the slightest yet dealing with others exhausts me to the point if I don't have a chance to process/decompress it all I'll shut down which is one of the most frustrating things, as I cannot express this to anyone never mind expect them to understand it.. not a great combination when you physically already feel poorly/worn out through other health issues much of the time.

Weird one for me was also the digestive issues associated with AS (IBS and in cases poor texture tolerance with some foods) which seems to be a thing with others sometimes as well.

I am a past sufferer of PTSD so no stranger to depression/anxiety (the situation does not help)

Not everybody is the same though and cannot emphasize this enough.. its as much about playing off your strengths (we all have them) as it is managing your shortcomings

I do wish your family the best of luck and hope you receive the support you seek