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GUIDANCE TO PARENTS WHOSE SON JUST BEEN DIAGNOSED WITH CLINCIAL AUTISTIC TRAITS

FAIRYDANCE

First time on the forum ...

Our son of 30 has only just been diagnosed with clinical l autistic traits  (does not meet full ICD-11 criteria for Autism Spectrum Disorder, he exhibits functionally impairing traits in the domains of communication, interpersonal functioning, and executive processing. His ADOS-2 and ADI-R scores highlight subthreshold but clinically significant traits that would historically align with atypical autism or PDD-NOS”  ; he also has OCD/ depression.  

Having now swotted up on autism,  I can now see the issues that were right before our eyes. He had been diagnosed with OCD/depression over 10 yrs ago - no one ever suggested autism at the time.  It is clear now that these autistic traits  were present   way before the ocd/ depression. Until that point - when  he was clearly very ill / disturbed - I am guessing  he had been what is called high functioning   - he certainly was to the world  eg school / sport/ interaction with people ( although maybe a little shy and ill at ease) . 

This recent diagnosis  came from a renewed willingness of our son to engage with the medics - he had asked for an autism assessment - and so we set it up / paid for al involving him exactly as he wanted. That bit worked well but the next bit re therapy  and medication optimisation  designed to help him didn't - so all clinical  interaction  has now stopped again .  son is disillusioned again.   

So no wonder he blames us for his situation . These last 10yrs he has pretty much removed himself  from the world  which he feels is unkind and scarry; he has never  worked, lives at family home ;  has money coming from PIP/UC ; has only one or two friends who have stayed close .  He had such potential /so many dreams of what he wanted  to do in his life  -  now he is almost a recluse and deeply unhappy ; at times not wanting to be on this world anymore.   

Any tips please how on earth we can:

- help him now

- how we can learn to interact  with him better

- and hopefully heal the wounds  he has  about us  - before it is too late ( we are mature parents!  We worry what will happen when we are not here to protect  him)   

- and most of all help him get whatever support and help he might need to  have a happier and fulfilling life - under his terms. 

I am finding  it quite  hard to get the appropriately qualified therapists / even psychiatrists etc ..   - maybe there is a different route of help - not so clinical?   

Any thoughts welcome please - we wake up and go to bed thinking what can we do ?  How can our precious son be ok  / safe / happy?  

Many thanks 

  • Hello FAIRYDANCE, welcome to the community.

    Just a note to say we cannot offer medical advice but I have a few thoughts on your questions.

    First of all - there is a good selection of support articles on this site - https://www.autism.org.uk/advice-and-guidance

    FAIRYDANCE said:
    the next bit re therapy  and medication optimisation  designed to help him didn't - so all clinical  interaction  has now stopped again .  son is disillusioned again.   

    Medication for autism in general is often not effective (assuming it if for anxiety) as it is a result of the way our brains are wired  Are there other factors that have led to the use of medication?

    The support that we tend to respond to best is a therapist, but it needs to be one who really knows about childhood autism and who can make a connection with your son.

    This person should be able to help him develop healthy coping mechanisms and be able to role play these enough to build confidence to use them, while helping him spot when he is becoming stressed so he knows to back off.

    FAIRYDANCE said:
    I am finding  it quite  hard to get the appropriately qualified therapists / even psychiatrists etc ..   - maybe there is a different route of help - not so clinical? 

    There is a good list of these here: https://www.psychologytoday.com/gb/counselling

    Use the filter to add any relevant criteria you want and you should be able to arrange a trial session with the ones you are interested in.

    The risk of going down a non-clinical route is finding someone who has the right training and understanding of autism. They can easily cause more trauma by pushing techniques that don't work and are often not much cheaper.

    If you want a more informal approach with your son then this can be part of the interview process to see if they can do this.

    These are all just the thoughts of some random bloke off the internet so please treat them as such and do your own research before considering any of them.

    Good luck