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Is it worth pushing for a second opinion

SB

My 7 year old son was assessed today. No diagnosis of ASD or ADHD. They say they would like to do further observations and will request his school to get the Ed Pysch to do an observation.

Where does this leave us, I am not in agreement with the professionals. My son is very articulate but has sensory issues, social interaction issues, anxiety issues which impact on his physical health and behaviour issues. If they have ruled out ASD and ADHD what else could they be looking for from further observations.

I was certain he would get a diagnosis now I am feeling totally confused. I don't have much fight left in me.

Is it common for you to go through several assessments before you get a diagnosis should I be requesting a second opinion, if so, how?

 

 

 

  • I don't trust Educational Psychologists after I listened to the opinion of our one 4 years ago, when he said he didn't see any signs of AS in my daughter.  He didn't rule out an assessment being a possibility but his report made it clear he was of the opinion that she didn't have it, the way he gave a list of stereotyped examples that he saw no sign of an AS style reaction to and explained away her individual reactions with other reasons.  I trusted them and now have a daughter aged 12 who definitely has AS and is in denial whilst she is suffering terribly at school.  We are awaiting a 2nd opinion at a specialist clinic, which I demanded BTW.  Our CAMHS failed to diagnose her.  CAMHS just doesn't have ASC expertise and I have heard so many bad stories about them.

    You request a second opinion via your GP.  You explain what happened, tell him/her that you are dissatisfied with the outcome of the assessment you had and you have very good reason to believe your son does have an ASC and that he needs further investigation by a specialist centre.

    BTW if they used the ADOS on your son, I researched on it's clinical reliability and it's only 77% reliable as it was researched on classic clases of autism and therefore it is not very good at identifying high-functioning cases.

    When you start to flag, and feel it's all too tough to fight, remember this is your son and you are fighting for what he needs and what he deserves.

  • Hi SB,

    I thought I would just tell you my story because I was put off going for a second opinion for a very long time. 

    My son recieved a full diagnosis earlier this week.  He is 6 years old and I have been fighting for 3 and a half years to have it recognised.  We were very let down by our local service and were lucky enough to get a referral to a centre of excellence.  They were shocked that I had had to fight for a diagnosis as they considered his problems to be very apparent and  quite severe. 

    Over the last 3+ years he has had countless assessments and observations all of which pointed towards ASD but always with the same outcome of 'let's wait and see'.  I am not saying this to undermine your faith in the service which you are getting because for all I know, they are great.  However, I was certain my son had ASD and no-one was taking action.  By all means, carry on in the system you are in to see what the outcome is but don't be afraid to insist on a second opinion when the time comes.  I think too many people are put off by a varity of factors.  Don't worry about offending your doctor - they should understand the importance of getting another opinion.  And don't be put off by people arguing over the cost of referring out of area either. 

    I hope that helps a little and I wish you all the best.

  • Did they say they had completely discounted asd and adhd? My son didn't get his official asd diagnosis until he had been seen by the ed psych (he saw the paed, speech and ed psych all in seperate appointments). It's possible that they just haven't seen enough for a definite diagnosis yet. Either that or they don't feel he fits the criteria for asd/adhd but they may feel he fits the criteria for something else eg ocd/odd/pda/spd or just want to assess his needs so he can be supported at school.

    Providing they are going to be done in the not too distant future I would wait and see what the outcome of the further observations is and if there is no diagnosis or one you don't agree with then I would pursue a second opinion. It certainly isn't unheard of for milder cases of asd/adhd to be missed in young children.

  • In some respects it is actually good news as they have requested an Ed. Psych report as it means that they are willing to investigate this further. 

    It maybe worth you writing your own report of your concerns and sending this to the Ed. Psych to take into consideration.

    All the Ed Psych's I have come across have been more than happy to discuss their findings with me, so try to keep the lines of communication open and "pick their brains" so that you have a better understanding of your childs issues and more importantly his needs.

    Good luck.