ASD/Aspergers help please

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potluck
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ASD/Aspergers help please

Postby potluck » Tue Feb 16, 2021 9:16 am

Hello,

I think my son might have high functioning ASD/mild Aspergers and I'm wondering how to deal with his behaviour. He's 8 years old and getting bigger and stronger and can be verging on threatening in his responses if things don't go his own way. Of course I'm sure lockdown doesn't help, but I hate seeing him so upset. At the moment, he cries most days if he doesn't get his way and gets very upset by plan changes; we have to listen to all the complaints and negativity which is exhausting.

I feel he is wired slightly differently, and have always felt this. My husband just doesn't get it and puts it down to 'bad behaviour' and 'poor parenting/not being strict enough'. I  don't believe this to be the case. I think he in particular needs help in how to deal with our son when he gets so upset, and to understand why our son finds some situations so challenging.

I know there is the route to get children officially diagnosed, but I'd rather a recommendation from a specialist who can recognise traits and can advise on how to deal with the consequent behaviour.

Can anyone relate to this behaviour and ideally recommend someone who might be able to help?

Many thanks.
 
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Moonlightdawn
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Re: ASD/Aspergers help please

Postby Moonlightdawn » Tue Feb 16, 2021 3:06 pm

Hi, I could have written your post, word for word. I’m sorry to hear about what you’ve been going through.

I was in the same position as you a couple years ago. One of my children was always a little “odd” from the outset. My intuition as a mum from going to play groups, birthday parties, the playground, etc was that something was different.

Similarly to you, my husband wasn’t very understanding or compassionate. I too was told that I was too soft and indulging the breakdowns. I felt isolated and emotionally drained.

I did lots of research and ended up getting an appointment with Dr Eleni Paliokosta at The Effra Clinic. She is absolutely wonderful. Very gentle and knowledgeable. I can’t recommend her enough.

My husband and I also turned to a marriage counsellor to help us manage our different, conflicting parenting approaches and understand one another better. It has helped us tremendously along with other aspects of our relationship.

As a family, we are in a much better, happier place and our child is thriving. I also recommend the book My Child is Different by Elaine Halligan. Really eye-opening; the emphasis is on love and compassion.

Sending you my best wishes for you and your son. There is light at the end of the tunnel, hang in there.
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2009Kat
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Re: ASD/Aspergers help please

Postby 2009Kat » Tue Feb 16, 2021 3:51 pm

My son has ASD.  What has really helped us is to understand that a lot of his behaviour comes from anxiety (new things, transitions, changes in routine etc -we have a planner for the whole of this week so he knows what is happening and when, unstructured time is difficult for us).  Realising that, avoiding triggers where possible and employing strategies to help rather than trying to discipline behaviour they can't help was a bit of a turning point.  And then when your child can actually tell you, it helps (functional communication can be difficult). So, I guess my point is you need to understand the why/cause before you can deal with the behaviour because often you can deal with the cause. 
I'm not sure who to recommend as it kind of depends on what your child needs - maybe a child psychologist, psychiatrist (we recently saw a psychiatrist at the Dr Giarioli clinic), behaviour analyst.
Good luck.  As pp says "emphasis on love and compassion" and you can't go wrong. Good luck

 
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Dud1ey
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Re: ASD/Aspergers help please

Postby Dud1ey » Tue Feb 16, 2021 5:06 pm

Hi, another big fan of Dr Paliokosta here. I can see that you want informal help and advice rather than an official diagnosis. Obviously that’s your choice but we found a diagnosis massively helpful in that it opened lots of doors (eg to OT support on the NHS) and also helped us with getting the extra help at school.

You’ll find that there is so much to learn about ASD, there are so many smallish things you can do to help your child, but you really need to understand it. For example, sensory needs are a big thing and can really affect behaviour. We attended the Cygnet course for parents which was brilliant and helped us try to understand what it must be like to be “wired differently” and put in place simple strategies to deal with it.

Another point is that your child doesn’t really need to know about the diagnosis at this age if you don’t think they would understand it. The ASD diagnosis was done through two separate parent interviews (one with a psychiatrist and one with a psychologist, without involving the child). It was only the final stage which involved the child and it was more or less one hour chatting and playing with Dr Paliokosta. It isn’t a traumatic process to go through.

Good luck, I know how difficult it is coming to terms with this. I’m constantly in awe of my son and his amazing, creative, slightly whacky way of thinking, so having the extra support has really helped figure out what is best for him to achieve his potential (I hope).
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potluck
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Re: ASD/Aspergers help please

Postby potluck » Wed Feb 17, 2021 7:08 am

Hello,

Thank you so much for you kind and insightful words. I will certainly look into Dr. Eleni as recommended. It’s so strange as one day he’s not coping and the next he seems fine. I then think with age he’ll understand things better. But the flare ups happen, so I think to see someone for an external opinion would be really helpful.
I feel I know him pretty well whereas my husband really needs to understand what’s possibly going on and how to understand him better.
Perhaps the marriage counselling should be a consideration too - we also have two very different approaches, as we are two very different people.
Thanks again for your advice on Dr. Eleni, and the book also.
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potluck
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Re: ASD/Aspergers help please

Postby potluck » Wed Feb 17, 2021 7:13 am

Thank you, this and the other posts are really helpful and encouraging. I agree that punishment is not the answer and instead empathy and understanding is far more important. He seems wired to be negative about certain things, and would happily be inside playing Lego or computer games (which we massively restrict). Once he is outside he then enjoys it, but is always very vocal about what he doesn’t want to do and why. Other days he is as happy/good as gold so it’s hard to tell sometimes if there is an issue or not. Thank you for the advice.
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potluck
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Re: ASD/Aspergers help please

Postby potluck » Wed Feb 17, 2021 7:17 am

Thank you also so much for your words of advice. I agree it certainly creates a wonderfully interesting, different child who I love spending time with. I will look into Dr. Eleni in the first instance. Thanks again.
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parentpractice
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Re: ASD/Aspergers help please

Postby parentpractice » Wed Feb 17, 2021 10:16 am

Dear Pot luck

I'm actually the author of the book My Child's Different, which someone has mentioned in this thread, and I completely understand and empathise when you are living with an explosive child and sense that he is not BEING a problem but HAVING a problem. You are the expert in your child and I would trust your instinct that you believe he is differently wired.

This is nothing to do with poor parenting or bad behaviour and my guess is that your husband's reaction may also be born out of fear. No parent plans to have a child who is neuro diverse and as Emily Pearl Kingsley says in her poem, as parents we anticipate the arrival of our baby and compare it to a fabulous holiday to Italy, but instead we land in Holland, which was just not where we expected to be. My own son was diagnosed with so many labels he became known as the ALPHABET KID  - PDA, ODD, ASC, ADHD, DYSLEXIA to name but a few!

The positive parenting piece is indeed important, as you need to know how to connect with your son in these explosive episodes, but I believe you can only do that when you understand:

1. His temperament. He sounds intense, sensitive and quite impulsive? And you have already highlighted he finds change challenging ,so sounds as if he lacks adaptability and flexibility. Lockdown version 3.0 may have magnified something that has actually always been there, but you are now looking at it with a different lens

2. His educational needs  - how is he coping at school. Do they see the same behaviour?

3. His social and communication issues

My experience also suggests that there are often other ,what they call co-morbidities, and often ADHD can sit alongside ASC.

There is however always hope in the face of adversity and I would seek an ASC assessment. You can do this via your GP and they will refer you to CAMHS ( long wait list and provision/ service varies hugely across boroughs) or you go privately and both Dr ELENI at the Effra clinic and Dr Campos at Giaroli and Associates are very good recommendations. Dr Campos is a specialist in ADHD.

Please feel free to reach out to me at www.theparentpractice.com, as this is my story. I help with the positive parenting piece and  behaviour and help parents reframe 'difficult' as 'different'. Indeed once you can embrace the neuro diversity, you then start to see your son as having a Ferrari brain, but with bicycle brakes, and then the magic really start to happen.

Take care 
Elaine Halligan


 
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Bevvers
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Re: ASD/Aspergers help please

Postby Bevvers » Mon Feb 22, 2021 5:12 pm

Hello,
I work with children who have ASD among other things. Your situation sounds very similar to a child I worked with last year. You have been given such good advice here, but may I also add one thing? It will become even more important that you and your husband present a united front and parent in a similar way. Otherwise it can be very confusing and frustrating for your child. I only say this because the child I mentioned didn’t have this and the problems it caused were way bigger than any diagnosis. His was an extreme case, and I don’t want to alarm you. Good luck
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