Son diagnosed Autism Level 1 at age 23

citroen71 said:

if hes got level 1 autism he can still interact with people well enough

I fully appreciate that your reply is well-intentioned. But I’m afraid it relies on an ableist assumption and over-generalisation.

The levels (provided only under DSM diagnoses) are:

• 3 - Requiring very substantial support
• 2 - Requiring substantial support
• 1 - Requiring support

These represent levels of support needs in respect of autism. They aren’t a more general measure of functional capabilities, and they don’t take any co-occurring conditions into account.

It’s not safe to assume that all autistic people with level 1 support needs can necessarily “still interact with people well enough”. That minimises autism. All autistic people, by definition, have differences (medically, “deficits”) in respect of social interaction and social communication. (NSO also shared that her son struggles with social anxiety).

It’s also not safe to assume that someone with level 1 support needs necessarily either wants to, or can, socialise more (including getting involved with clubs or activities). 

Hopefully my reply to NSO helps to explain more. I don’t mean to be rude here, so please don’t take offence. And, again, I don’t doubt - at all - your kind intentions.

Hi and welcome to the community.

I'll share my own experience, and also some resources. Your post covers a few different topic areas, so I'll try and split it into sections, to make it a less challenging read! There's a lot here, but I wanted to be as specific as possible in signposting you to resources that might be helpful.

1. After diagnosis

After my own late diagnosis, I retreated from my parents. (They live a long distance away, so that was obviously easier for me to do than if I'd been living with them). There can be a lot to process and a lot of emotions to try and deal with, not necessarily just immediately, but potentially also over time (days, weeks, months, years) - although the experience can obviously vary a lot from person to person. This article explains more:

NAS - How will I feel after receiving an autism diagnosis?

I also felt utterly exhausted in the period immediately after my diagnosis. The process had felt extremely stressful, and I needed (although wasn't actually able, for reasons that aren't relevant here) to recuperate for a while in super-low demand mode. This article explains more about these kinds of issues:

NAS - Autistic fatigue and burnout

If  your son hasn't yet seen them, and when he feels ready (keeping mind what I mentioned above), perhaps you could suggest that he has a look through the "After diagnosis" section in the diagnosis hub. He might also find it helpful to join this community. There's no obligation to post regularly or even at all - but he might find it helpful to read about our various experiences and struggles, and the things that have helped us.

2. Support for your son

The diagnosis hub includes this article, which might be a useful starting point. It explains, for example, how guidelines recommend that his GP (or other key worker) works with him to develop a personalised plan: 

NAS - Formal support following an autism diagnosis

His diagnostic report might itself suggest some follow up actions. For example, therapy or counselling are often recommended, for our GPs to arrange. If so, and before arranging anything, your son might find it helpful to borrow or buy this book, which includes discussion of various types of therapy and counselling, together with advice on choosing the right therapist or counsellor - all from an autistic person's viewpoint. Several of us here have found it very helpful:

The Autistic Survival Guide to Therapy

I'll also just mention a couple of other books that I and others have found helpful early on in our post-diagnosis journeys - the first one might make for a timely gift:

Self-Care for Autistic People: 100+ Ways to Recharge, De-Stress, and Unmask!

How to Be Autistic (free download currently available via this page)

3. Aggressive behaviour

NSO said:

since he is back home his attitude has become aggressive to the point I barely talk to him

Alongside the resources I mentioned at the beginning, this might also be helpful:

Autism and anger management - a guide for parents and carers

4. Support for you

You might find this article helpful: 

NAS - Emotional support for family members after a diagnosis

It includes, for example, details of the NAS's parent to parent helpline:

NAS - Parent to Parent Emotional Support Helpline

5. Independent living 

There are various other resources that might be helpful for exploring this, including:

NAS - Social care

NAS - Financial help, money and benefits

I hope that some of this, at least, is helpful.

ah that sounds really hard to try and be there for your son you are doing a good job but it will be hard, the are autistic clubs that specialise in building a community and friend group for them to socialise, have you seen if the is a club in your area.

He is suffering from social anxiety, he is not leaving the house only for doctors appointments and it is extremely hard to make him go. Then the odd supermarket trip, he only reads manga and plays video games all day.

Thank you very much, I will be looking for charities in my area.

The appointment with the GP is in a few weeks, let's see what they have to offer.

if hes got level 1 autism he can still interact with people well enough, does he have any clubs or social groups he goes to, if hes aggressive and frustrated going a martial arts club could be a good way for him to find somthing he enjoys while focusing his energy in a productive way 

Hi Ann, thanks for the advice. I got tearful reading your message.

I will leave him alone for now. It has been hard to  process it for me too, I mostly feel guilty for not paying enough attention to things that I only thought were his personality. Now reading about autism it becomes very obvious that something was off but our family lives abroad, it may have been discovered if we didn't move country and that's my doing.

I hope he can get out of the social anxiety and depression soon.

Thank you again, have a nice weekend.

Hi, I was also relatively late diagnosed at age 25. It is a lot to process and 5 days is still very short. I had suspected for a while I might be autistic and it still really affected me when I got the diagnosis and it brought up all kinds of feelings and thoughts. I would say I am still processing 4 years later. I would give him time - he knows he can talk to you if he wants to - I wouldn’t push it. In terms of being aggressive towards you autism Is no excuse for that though sometimes when we are struggling or frustrated it can burst out and end up being directed around those around us. I am not proud of it but I have at times said things that are not very nice to my mum- we don’t live together so it was mainly over the phone- I usually didn’t even realise I was feeling really frustrated and then before I knew it it just burst out  and was unfairly directed towards her which is unacceptable. I then always really regret it and I am generally very considerate and careful to not hurt anyone’s feelings - I am now getting better at recognising when I am in this mood and just don’t talk to people then but when this first started happening it took me by surprise and the damage was done before I knew it. It only happened with people I feel very comfortable with probably as I mask less with them, which makes it even worse. I am ashamed of this but thought I would share in case something similar may be happening with your son. 

A diagnosis can be a lot to process. Maybe give him some more time with his own thoughts before asking him to listen about your research. Also remember that autism is a part of him so someone telling you all about it can feel a little intrusive at times. That doesn't mean doing and sharing research isn't a good thing but just be mindful to allow him to express how it is for him. He isn't going to fit into every piece of research you find.

I'll be honest, I've never heard of an autism support package through a GP. Support unfortunately can be very lacking for those of us with autism. I hope your area is a good one for what can be offered.

It must be difficult if he is being aggressive towards you. Autism is certainly no excuse for that. It does sound like he is struggling with something though.

Most areas have charities that support people with autism. Some are far better than others but it may be worth seeing if there is anything they can do to support your son. They often run programmes to support with independence etc.

It sounds like a very difficult situation at the moment. I hope it eases for you both.

Hi NSO,

Thank you for sharing your experience with our online community. From what you have described, you are doing your best to support your son while also coping with your own health challenges, and that is a great deal for anyone to manage. Five days is still very early after an autism diagnosis, so giving him time to process the news while seeking guidance from your GP and local autism support services is a positive step.

 Our website has a diagnosis hub, this includes information, practical and multimedia resources to support autistic people and their families before during and after diagnosis.  

 You may want to visit the other resources on our website, we have advice and guidance on a wide range of information about autism, socialising and relationships, communication and education: https://www.autism.org.uk/advice-and-guidance 

 You can try searching on our Autism Services Directory for diagnostic services in your local area.  The Directory also includes listings for support and social groups for autistic people, their families and friends. 

 I hope you find this information helpful.

 Rishma Mod