Just Diagnosed – Emotional Tips for Families

If you have recently received a diagnosis or perhaps you are in the process of getting a diagnosis, you may be wondering which way is up.  We know because we’ve been there too and remember what a frightening, exhausting and confusing time it can be.

So we have asked other parents, who have also been where you are, to share their top tips.  The things they wish they had known at the beginning.

We have split the tips into three categories.  Emotional Tips for Families.  Practical Tips for Families.  Tips for Friends and Family.

Emotional Tips for Families

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  • Know that whatever happens, it will be OK.  Even if that seems hard to believe at this very moment.
  • Don’t compare your child to anybody else’s  They are themselves and their potential is not defined by a diagnosis
  • Don’t listen when others compare your child to theirs – You know your child best and know what they need
  • Don’t listen when others say “oh my son/daughter does that” when you are dealing with behaviour related to their diagnosis.  They are only trying to a) make you feel better or b) make you feel neurotic.  Ignore them.  Just nod and say lots of naughty words in your head.
  • Remember that some days you will feel like your downing but there will also be days when you will be wanting to shout from the rooftops
  • Take each day at a time, don’t try to do everything at once.
  • Celebrate even the smallest of achievements.  They may seem insignificant to others but to us they are major.
  • Don’t be too hard on yourself.
  • Try where ever possible, to have some “me” time
  • Allow yourself to struggle. It will overwhelm you, you are not perfect.
  • Have friends who just listen and are not dismissive.  It may take some time to find the right person, it may not even be a friend you have now but they will be out there.
  • Make time for yourself/your partner.  A strong partnership is essential with the journey ahead
  • Ignore
    • when school say “but their levels are not low enough”
    • when other parents say “but they’re not as bad as ….”
    • when others suggest it may just be your bad parenting
    • The looks at the school gate and the parents who walk away from you
  • Trust your gut instincts
  • Find a shoulder to cry on – someone you can offload to without worrying about how they may feel after you have.
  • You may feel hurt and want to pick your family up and run away.  This is normal.  You are not neurotic!

A few months ago, we produced a video for parents.

Next week we will be looking at the practical ideas, the things you can try to help you get back upright and feel a certain amount of control.

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1 Response

  1. Roseann says:

    Great advice for parents be useful to have advice for recently assessed and ‘diagnosed’ adults. Especially when the adult is the parent of a child already diagnosed on the spectrum. Some adults are very self accepting and find orienting themselves to the news of the diagnosis easy. For others it’s a far more difficult journey.

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