child with ASD

[Lucy Flackett-Whiteside]

Hi
I am new to the forum. My son has ASD diagnosis and is living with his father. i need some help. My son is 12 years old and is locked in his room every night by his father with disputed sleep disturbances. i have called agencies and services about this many times, but they wont give us any support on this. Can you please give me some guidance on sleep disturbances with ASD and what i should do about it. I dont accept he should be locked away like this forever.

 

[Alexej]

Hi @Lucy Flackett-Whiteside

Welcome to the Forums.
Which country are you in? It does seem pertinent to this discussion.

Regarding sleep issues I cannot speak to that topic and leave it to others to address.

 

[Lucy Flackett-Whiteside]

I am in UK

 

[Thinx]

Hi and welcome. Do you have access to your son? When you say, they won't give us support, do you mean yourself and a partner? Do services object to you or your partner in some way? It would be improper for services not to take your view into account if you are co-parenting, so you can appeal on this if that is the case, but it may be that you are not co-parenting with his father?

Sorry to ask these questions, but it's very unusual for social services or other relevant agencies to take no notice of a parent's concerns, and I wondered if you may be in dispute over custody of your son, and not currently have custody or access? This might be why services wouldn't be discussing his situation with you? What justification is given for locking the door, and how did you learn this was happening?

 

[Lucy Flackett-Whiteside]

I am not able to co-parent with my ex and he has custody. I have reported this all to SS and they wont do anything to help us as a family. I keep asking for help. All I can see at the moment is medical neglect of the child .But they are making allegations against me which are entirely false. They say they are working with the father to stop him from locking him up. But when I beg and plead with hm to get him help he says he will not do anything. I am really frightened now. I have raised such a fuss and then received death threats in the process. I just want to understand the impact of sleep on ASD. My son has a rare genetic disorder which causes sleep disturbances and in some cases suffocation to death, but they wont even accept he has the genetic disorder, which was diagnosed by Great Ormond St hospital. I am terrified of these people now

 

[Neonatal RRT]

Perhaps you have already been doing some research on your own, but a few here might be helpful in understanding the underlying issue of sleep disturbances and what may help reduce the symptoms.

Sleep problems in autism, explained

A Closer Look at Sleep Disorders with Autism - Autism Parenting Magazine

Autism and sleep disorders

My personal supplement regimen with this:
1. 5mg melatonin...a hormone often low in autistics...sleep aid
2. 400mg L-theanine...a glutamine blocker...anxiety and repetitive behavior reducer
3. 800-1000mg chelated magnesium...muscle relaxant, relaxes the blood vessels, slows the heart rate
Take all 3 before bed time.

**Do your research on this,...and there is. You can do searches on PubMed, Medline, and Google Scholar. Talk to your pediatrician to see if this would be appropriate.

 

[Thinx]

This sounds very difficult. Have you reported the death threats to the police?

In regard to your son, do you have something in writing from Great Ormond St that you can show social services?

 

[SDRSpark]

There are two issues here. Neonatal RRT covered the sleep issues already and I'm sure did a better job than I would have.

The other issue is your son's father keeping him locked in his room at night. This is not OK - for God's sake, what if there's a fire? You say social services is working on that and I hope it's true.

I think you should get a lawyer on board for this one. This is beyond the scope of what an online forum can help you with at this point.

 

[Crossbreed]

The appropriateness of "locking the room" varies from case-to-case particularly based on ASD severity level.

We have been advised by an (ex-cop, father of ASD) autism safety specialist.

If not locked (at bedtime),

1. Our (ASD3) daughter would raid the pantry, not just grazing sugar, etc. but dumping other supplies and, perhaps, trying to ingest cleaning agents.
2. She would be at risk for elopement, on good-weather days. (That is wandering away, not running away.)
   
3. She would be at greater risk for starting a fire by playing with the stove, etc.
4. Her doctor at the time (who also had disabled kids) defended it as a "safe space."
   
5. Per the expert if there was a fire, she would try to hide from it (under furniture, etc. making it harder to find her) where being locked in her room, we would know exactly where to collect her.
6. She has a commode in her room.
   
7. (She is not locked in during the day.)

Also, she has a half-door so she can see us and we can see her; so it isn't like she is locked in a closet with no contact.
(Our local social services had the same objections, until the safety specialist weighed in.)

 

[Streetwise]

Hi
I am new to the forum. My son has ASD diagnosis and is living with his father. i need some help. My son is 12 years old and is locked in his room every night by his father with disputed sleep disturbances. i have called agencies and services about this many times, but they wont give us any support on this. Can you please give me some guidance on sleep disturbances with ASD and what i should do about it. I dont accept he should be locked away like this forever.

You need to contact a solicitor who specialises in disability law !!!,social services probably won't do anything as they won't visit any residences until after March !!!if they can in March, keep everything relating to your son !!!!and your involvement since his birth and inutero(when in the womb),social services might not have all those records ,write any incidences with your ex-husband conversations,if you can't afford a solicitor, look for pro-bono solicitors ,paid by the losing party ,contact Great Ormond St !!!,ask for their opinion of what should happen to him at night and get it in writing ,for the paper pushers!