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Coping with my emotions as a parent of a late diagnosed daughter.

NAS85436
over 1 year ago

Hello, my name is Sue.

My daughter is 26 years' old and was diagnosed (privately) with ADHD, Autism and PTSD about 18 months' ago. This followed several years of being prescribed a variety of anti-depressants and several rounds of CBT through the NHS. We are funding her psychiatric treatment and therapy privately. My daughter tells me that she first became aware of the need to "mask" from the age of about 8.and I can recall her saying to me "Mummy, I am different" and my response was "different doesn't mean bad, sweetpea".  She presents as a confident and vibrant young woman because of her learned strategies. The amount of energy and stress this means for her has led to a series of "burnouts" which impacts on her ability to work. 

My experience, so far, is that there is lots of support and guidance out there for how to support your child, far less on supporting adults. What I crave is a non-judgemental forum where I can share candidly the impact this is having on me and the rest of the family. Is there anyone else out there who has felt any of the following:

  • Guilt that you did not recognise the symptoms earlier (my daughter is an only child, so I had no comparison)
  • Sadness in coming to terms with the fact that their life will be very different
  • Need to be perfect - "treading on egg shells" and putting pressure on yourself to behave with compassion and empathy at all times
  • Anger - at the "system" that has not supported my daughter (education and NHS)
  • Resentment - that at a time in my life when I should be preparing for retirement, my daughter is always centre stage (God that sounds so selfish, doesn't it)
  • Frustration and disappointment - when life long friends and extended family members "just don't get it"
  • Exasperation at society - where the focus still seems to be helping neurodivberse people to fit in and cope/ rather than celebrating the strengths of their differences

I realise that this list is becoming rather long:(  Do any of you recognise any part of my emotional roller coaster?

 

Parents
  • over 1 year ago

    Please don't be sad or guilty.  If you were and are an emotionally available Mum to her and she can talk to you then you are a great Mum!  I'm a suspected autistic mum to two adult daughters on the spectrum (ASD  & ADHD).  We never feel frustrated or disappointed about these diagnoses, we use humour and complete honesty and openness to navigate our way around the world and each other.    You can still retire and your daughter can still be independent when she is well supported in her particular needs.  

  • over 1 year ago in reply to grooveisintheheart

    Thank you. Interesting what you say about humour......we have started to have fun. My daughter clearly relishes pointing out my autistic traits and saying "see......your fault I'm a weirdo". We also have a short hand of "hoiw many spoons do you have today"......meaning level of energy/ motivation. Sue

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  • over 1 year ago in reply to grooveisintheheart

    Thank you. Interesting what you say about humour......we have started to have fun. My daughter clearly relishes pointing out my autistic traits and saying "see......your fault I'm a weirdo". We also have a short hand of "hoiw many spoons do you have today"......meaning level of energy/ motivation. Sue

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