"He doesn't seem autistic"

[BirdMum]

My DS is 3.5 and has a diagnosis of autism spectrum disorder.

By 2.5, it was obvious he was very behind. 90%+ of his speech was just direct echos and the rest was monosyllabic. He did not know his name, he spent hours flapping/spinning/toe walking or just lining things up. EVERYTHING had to be lined up. He didn't want to be touched or held. Other children didn't even register on his radar. Eye contact was only incidental. Essentially, he seemed for all intents and purposes to be classically autistic.

We first sought help at 2yrs8 months old/last September. We saw a GP to get our referral to pediatric psychology services - the GP was so shocked by his behaviour that he called the referral in directly, and we were seen within a couple weeks (very rare here. We have a small population and referrals generally take a long time.) The dev pedi highly suspected autism, but referred us to a ped psych who we saw in January. He was diagnosed at that time.

Since last September, when I decided that I needed to stop waiting for DS to 'outgrow' his issues, I've been integrating methods from a variety of autism therapies into our day to day lives. We have seen HUGE improvements, but there are things that are beyond my ability to cope with as an informal, self-trained therapist. He is due to start IBI and OT this month.

However, due to the fact that he has improved so much we have been running into an attitude that he 'isn't autistic' or that he's 'high functioning' and thus needs less help. They assume all of this improvement is 'without help,' when it isn't. His improvement is from hundreds - thousands - of hours of us integrating discrete trials and behaviour analysis into everyday life. But I have my limits in what I can deal with. Elopement, sensory rages (that can go on for hours), self-injury, his extreme and unprovoked violence... these are things that are beyond my ability to deal with. I need help for those. I'm just finding it frustrating that the people who see him *now* are treating him almost as though he's misdiagnosed because of the ongoing assumption that his improvement is unaided.

How can I get them to see that we still need a LOT of help, and that I have put a LOT into helping him and have just reached the limit of what I am able to do?

[Emmeline II]

I'd try rewording this post into a letter, a bit like a cover letter to the "resume" of his medical record, and give it to his providers.

[kathteach]

Do you have a Regional Center diagnosis from your state, or is the diagnosis only through a private practioner?

Where is he receiving his services? Through your school district or insurance? This will help us answer more thoroughly.

[BirdMum]

Originally Posted by kathteach

Do you have a Regional Center diagnosis from your state, or is the diagnosis only through a private practioner?

Where is he receiving his services? Through your school district or insurance? This will help us answer more thoroughly.

I'm Canadian. Everything is paid for either by our provincial health care, or through the Early Intervention program through the school board.

The diagnosis is actually from a child psych in another province. There was an agreement with him to take on some assessments from my province to speed up the process for kids who need help sooner.

Most of our services are coming through the EI program. His SLP - who has been working with us since March - has seen how we work with him and has been very helpful with us requesting his SNA for preschool and things like that. It's just that the people who are meeting him now only see him as he is now - with the coping abilities we have been working so hard to help him learn.

The title of my post is something our new family physician said upon meeting my son for the first time, because DS greeted him (it took us 6 months to teach him to acknowledge people entering a room.) The IBI specialist we have met with has not been so blunt, but it seems we are running into delays we shouldn't recently. I am worried that they are putting him 'low priority' now when really, I need more help now than ever because I am at the end of my abilities.

[kathteach]

Oh BirdMum, I'm sorry I assumed you were from the States. You probably get that a lot, very ignorant of me.

I get that "he doesn't seem autistic" from family and it pisses me off, so I can't imagine hearing that from specialists as well.

This is what I think you should do:

1)Document what you have been doing at home. Document the name of the therapy, the hours you have spent, any educational materials you have bought. If possible, make up a sheet that shows your son's achievement before and after. Try to make it in goal form. For example, the greeting thing. Describe your son's behavior prior to your therapy, the goal you had for him, and how and when it was met. If you need some examples I would be happy to mail you the form my clinic gave me, just pm me.

2)Find out the names of assessments you need to prove HIS need! This is the hard part and I have no idea what the names are, but I bet you can find this info from asking moms here or perhaps through a google search. I am currently looking for the names of speech assessments for my son as his school district is considering him verbal enough for success in the classroom. It's always a fight mama.

3)Document the troubling behaviors you see in your son so you can show " that we still need a LOT of help, and that I have put a LOT into helping him and have just reached the limit of what I am able to do?"

I hope this helps, I really do.