FASD - is it worth getting pursuing a diagnosis ?

[catsruleok]

Hello, our DS (age 13yo, removed at birth and placed with us at 1 yo) has birth mum admitting she drank heavily on his CPR and drug taking (tested positive whilst pregnant and he was just under the withdrawal scale when born).

Maybe wrongly but we have never investigated a FASD diagnosis mainly as he the perfect student at school. In middle bands (highest group in English), never acts out, obeys the rules and manages his day etc. We and teachers do not think he overly compliant.

At home is a different story - hyper, often controlling, oppositional, lies, lack of focus etc

Thinking long term will it help our son and us to understand his behaviour ?

I assume getting a diagnosis is not that easy and no idea where we start ? Our GP?

thank you for reading

I think its worth it. You can hear from people who have fasd diagnoses say how helpful its been for them understanding why they struggle with certain things. Eg Kenny La Joys book or listening to AUK webinars. We are awaiting diagnosis for ours DD age 3, shes fine in school so far but often not at home. You can just see shes going to need support. We started through the heath visitor but you can also go through GP.

If your child is having difficulties, and he is, then having the correct diagnosis will be extremely helpful in you understanding and supporting him and in him understanding himself.

All I'd suggest is that you are open minded about which diagnoses it is you are seeking.There is a long and unproud tradition of adopted children being wrongly diagnosed eg with AD rather than ASD.

I would be cautious about pursuing an fasd diagnosis and the impact it could have on your son's identity, sense of self and wellbeing. Its fab that he is doing well in school. Given he is 13, it may be preferable to wait to see if he wants to do this for himself when he gets older. You organising for this now, will make little difference as it sounds like he does not need school support. I wonder then, who would this diagnosis be for?

Its not just about school life though,if he's struggling so much at home he's struggling,and as he gets older it's better people understand him as having a disability so they can support him?

There's more to life than school.

A correct diagnosis can make a huge difference to a person in terms of self understanding, acceptance, and adjustments, in a beneficial way. You never find someone saying "oh, be careful about getting him that diagnosis of diabetes..." so why for developmental conditions? If it's the correct diagnosis, and leads to the correct help, then great.

Thank you all for the time in replying.

Still unsure what to do but firstly we are going to do some life story work & have approached Post Adoption support.

I finding family life difficult, well maybe I am finding everything hard at the moment. Off to get my HRT reviewed.
Sigh...

Hi - thought I would do an update this in case it helps anyone.

Referrals : Surrey and Borders Partnership NHS Foundation Trust (fasdclinic.com) appears to be the only clinic in the UK.

As far as I can tell even if you are able to self fund a diagnosis you are looking at probably a 3 year waiting list and much work needs to be done prior to getting on the waiting list.

We have decided to start the ball rolling for a diagnosis. We feel that although an employer for example is unlikely to be unaware of what FASD is at least it can be explained and it will on record that he has additional needs.

thanks

Thank you - just saw your reply.

You have hit the nail on the head.

Our CAMHS neurodevelopmental unit assess for all potential neuro issues including FASD, developmental trauma, ASD and ADHD in one assessment process. It may be worth looking to see if your local CAMHS have similar. I’m in Scotland where there’s an increased awareness of the multitude of neurodevelomental issues with comorbity with particularly an increased assessment for FASD.

In Scotland care experienced children automatically are considers to have special needs unless it can be evidenced they don’t, which follows into school, college and university. In my case I am pursuing diagnosis, not because it records special needs or would change my parenting of my DD but because it may help her understand herself better.

I wouldn’t be too quick to separate out school and home life because one will affect the other, if he’s coping all day and doing well at school he may have completely reached the end of himself by the time he’s home, hence the behaviour you’ve been seeing. Relieving things at school might give him more capacity to regulate at home so it’s worth talking to school about how to give him a bit of wiggle room.

Well if there's evidence of FASD the getting a diagnosis is an obvious step. But - the behaviour you mention seems more like attachment disorders. Worth getting everything looked at via post adoption support. (I'm just a person sat in an armchair.) Kids with fasd are often operating more than half their age academically.