Long-term financial & estate planning for child on Autistic Spectrum Disorder (ASD) – where to start?

[sm7940333]

Hi all,

I’m looking for advice on how best to plan for the long-term support of one of our children, who was recently diagnosed on the ASD.

We’re at the early stages of understanding what this means for their future, and while we know it’s a long road ahead, we want to start thinking seriously about how to provide financial security — especially in the event that both of us (the parents) were no longer around.

Before we engage a solicitor re: the will, we’re wondering:

• Should we speak to a financial advisor first?
• What are the key things to consider in terms of wills, trusts, or other estate planning when it comes to supporting a dependent child long-term?
• Are there specific financial structures or entitlements that we should be looking at?

At this point, we don’t know what level of independence our child will have as an adult, so we’re trying to prepare for a range of possible outcomes.

Any personal experiences, professional insights, or resources would be hugely appreciated. Thanks in advance.

 

[Ihana]

I used financial wellbeing to get specialist advice on this. https://www.financialwellbeing.ie/

I'd recommend joining one of their webinars as a start.

 

[Brendan Burgess]

Start with reading this new book by an Irish neurologist living in London.

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[Dr Strangelove]

who was recently diagnosed on the ASD.

ASD is a very broad spectrum.

How old are they now? Do you have other kids?

How soon do you think it will be clear as to their potential to live autonomously and hold down a job?

I would not rush into something that may not be necessary.

 

[ClubMan]

Before we engage a solicitor re: the will, we’re wondering:

You mention elsewhere that you are a family of 5 (two parents and three children I presume?) so having a will is something that should be done anyway regardless of this recent diagnosis.

Lots of people with ASD/neurodiverse diagnoses live perfectly independent and successful lives. I've worked with several. And I suspect that if I asked to be checked I'd probably even be placed somewhere on the ASD spectrum myself!

 

[Ihana]

While I agree that certain conditions are being over-diagnosed, we have absolutely no idea of the circumstances of the OP's family and I think it would be helpful if posters responded to the question asked.

 

[ClubMan]

it would be helpful if posters responded to the question asked.

As ever, a risk with doing that is the old XY problem and not addressing the real issues.

 

[Dr Strangelove]

the old XY problem

Tell me you’re on the spectrum without telling me you’re on the spectrum

 

[Corola]

What is the real issue?

 

[ClubMan]

What is the real issue?

Sometimes that only becomes clearer through interrogation of the topic.

 

[misemoi]

so we’re trying to prepare for a range of possible outcomes.

OP has asked for advice in this context, we should not be discussing a medical diagnosis.

 

[Dr Strangelove]

we should not be discussing a medical diagnosis.

It’s utterly relevant to the topic.

I know of a severe ASD case of an adult man who is non-verbal, self-harms and who has a care team of six people.

I have friends who are probably ASD who earn six-figure salaries, own houses, and have stable relationships.

 

[misemoi]

It’s utterly relevant to the topic.

Agree, it is relevant but not a topic of discussion. The OP has already indicated they know of the possibility of different outcomes.

 

[Ihana]

The diagnosis of the child is really none of our business. OP asked on advice on planning for the long term.

 

[T McGibney]

It's impossible to advise meaningfully without at least some idea of the likely severity of the child's condition.

At this stage, I'd be prioritising the setting up of occupational therapy and other supports to enable and empower the child's development, and also finding a good and reliable solicitor to assist you going forward, including in the immediate term, the drawing up of wills if none are in place.

I'd worry about long-term financial provision etc only when the picture is much clearer.