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Diagnosis update

ralphtown

Well,I think this is my 4th post in this forum.

hopefully it might inspire those having trouble getting diagnosis or having problems finding their way thru...don,t give up folks :)

 

I have 4 kids am a 51 year old male(just had my birthday).

3 out of 4 "suffer" with ASD.

Eldest Son has dyslexia and other issues but never been diagnosed.

youngest Son has Aspergus and has been given full diagnosis.

youngest Daughter has all the symptoms of Aspergus,has had a diagnosis of depression,ADHD and low self esteem.Also has communication issues.

 

So.

Where did it all come from.Who is to "blame"?

Well,I had an idea that it might be me.

I went to my doctor who was a little less than helpful,so I called the NAS helpline.

They gave me a few pointers and I went back to the doctor with all the info sent to me by email from NAS.

 

after getting just a little "eggy" with my doctor,who told me I did,nt look like I had Aspergus,I finally got an appointment with the Autism unit at the reasonably local adult mental unit.

 

Last week I met with a lovely lady and have started the diagnosis process.

Its taken 51 years but HEY!

we,re on the way.

i,ve had a copy of a letter sent to my GP saying that further investigation is warrented.Read that as you like but I think,they think,I have an issue...or a million.

 

Bottom line...DON,T GIVE UP!!

If its you or your child that you have concerns about,KEEP DIGGING.

You have to complain,kick doors down,write to MPs...whatever.

There seems to be a certain feeling of closure,a feeling that I might finally discover why I,ve felt like a round peg in a square hole all my life.

It feels almost like some sort of religious experience.

Like the feeling you get when you go over the top on a roller coaster.

its a bit scary but its putting a smile on my face and I,ve not had one of those for decades.

RALPH.

  • Hi Ralph,

     

    Thats great you are getting the answers you need and hopefully some support to.

    Im now starting all over again because when I recieved my eldest sons report the psych said she felt my youngest needed to be formaly tested as well. So here we go again! fourtunatly he has been going to CHAMS for a while now so a lot of the background has been done. Also now ive been through it once at least I know what to expect.

    all the best

    Sam

    x

  • I'm glad you finally got some answers!

    My partner has his inital assessment next month and is starting on the first rung of the ladder.

    You sound like it's been a burden lifted off you shoulders.

    Take care

    Oatie

     

  • BINGO!!

     

    I have AS.

     

    got the diagnosis in August but have had to wait for the report to be completed.

     

    Also,staff had to have holidays etc,so its been a drag.

    But its done now.

     

    And I now know the WHYs and WHEREFOREs of it and things that I,ve done in my life all make sense now.

     

    imagine trying to do a 1000 piece jig saw puzzle without the box lid.

    You could,nt do it.You,d have problems making bits fit,that you thought were correct

    So,then along comes this Doctor and gives me the box lid.now I see the full picture and can start to adjust behavior and watch for the signs.

    I,ve got another appointment on 7th Sept and I guess I,ll get the full report and discuss support at that meeting.

    Keep fighting folks :)

     

    RALPH.

  • I was originally diagnosed with OCD and anxiety by a psychologist at the mental health team. I have suffered from anxiety all my life. I have always been tense and introverted. But the original cause of my anxiety is asperger's which is why the CBT I was receiving did not work. I only began to overcome some of my phobias once I had received the diagnosis of AS.

    Both schools I attended were hopeless in attending to my problems. Aside from me getting a statement of SEN at age 10, for difficulties relating to organization, spatial awareness, coordination and 'immature emotions', nothing was done. I had outside classroom support with comprehension and PE, but nothing was done about my problem making friends!.

    I often got into trouble at school. I annoyed the other children and never concentrated on school work unless it interested me. I was very immature and said and did inappropriate things, all in order to get a reaction because I could not relate in the usual way.

    I made progress socially in my teens, but it was all learnt behaviour. I learnt to talk nicely and to be receptive to other people. But I still struggle with social skills, even though on the face of it I can mask my difficulties very well, or so I have been told

  • Hi Ralph,

     

    Just wanted to wish you well, I also have 4 kids with different special needs my youngest is hyperactive, the next had hearing and communication issues then my second eldest was diagnosed with myeres irlene  and my eldest has aspergers and dyspraxia.

    My eldest has been under the care of peaditric doctors, physios and OT's all his life he has had speech therapy in the past as well. He was diagnosed with dyspraxia, developmental delay, hypotonia etc by the time he was 4 but because he was thought to be clever with physical dissabilities they missed Aspergers until I broke down in tears in the peadiatrics office when he was 15. (yes it was very embarassing first time id broken in public but boy im glad i did) The Doc turned to me and said i was describing a teenager with aspergers not  a kid with dyspraxia and that we needed this tested because this was something extra on top of his other problems.

    Long story short 20 MONTHS later my son finally got a confirmed diagnosis last week. I felt awful through all the testing and the relief when he was diagnosed was huge but then the guilt kicked in when i realised i was happy my son had aspergers. it took a few days to work out i wasnt happy he had aspergers i was happy that now i could talk to people who understood and get him the help he needs after all this time.

     

    This was supposed to be a happy positive post all im trying to say is hang in there, its worth it in the end.

     

    Sam

     

  • Let us know how you get on..My partner (39) is seeing the CPN tomorrow and is still requesting assessment...we are plugging away.

    Hope all goes well for you.

    x

  • All good news then:)

     

    I,ve got a further appointment on August 1st and I,ve been sent 3 questionaires with the appointment letter,which I,ve already completed.

    So,I,ll be off to see the head doctor very soon.

    Chin up!!

     

    RALPH.

  • Yes, you must never give up. I was diagnosed with AS two years ago, age 21. I had to fight  against the mental health team's intransigence, but it paid off and I got referred to a specialist NHS diagnostic centre. Having a diagnosis is a tremendous help. I now also, for the first time, have made some friends, with other young adults who have AS, and I feel more included and at peace with myself. It would have been far better if I was diagnosed as a child, but one can only go forwards.

  • Hi Ralph

    Thank you for your post.  It was inspirational and gives so much hope to people out there trying to get a diagnosis.

    Good luck with the future and everything you strive to acheive

    ColinCat